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Perceptions of Disability, Identity, Agency, Goal Attainment, and Young Adult Disability Programs Rachel Elizabeth Kallem Whitman

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Perceptions of Disability, Identity, Agency, Goal Attainment, and Young Adult Disability Programs Rachel Elizabeth Kallem Whitman Duquesne University Duquesne Scholarship Collection Electronic Theses and Dissertations Spring 1-1-2017 Perceptions of Disability, Identity, Agency, Goal Attainment, and Young Adult Disability Programs Rachel Elizabeth Kallem Whitman Follow this and additional works at: https://dsc.duq.edu/etd Recommended Citation Whitman, R. E. (2017). Perceptions of Disability, Identity, Agency, Goal Attainment, and Young Adult Disability Programs (Doctoral dissertation, Duquesne University). Retrieved from https://dsc.duq.edu/etd/154 This Worldwide Access is brought to you for free and open access by Duquesne Scholarship Collection. It has been accepted for inclusion in Electronic Theses and Dissertations by an authorized administrator of Duquesne Scholarship Collection. For more information, please contact [email protected]. PERCEPTIONS OF DISABILITY, IDENTITY, AGENCY, GOAL ATTAINMENT, AND YOUNG ADULT DISABILITY PROGRAMS A Dissertation Submitted to the School of Education Duquesne University In partial fulfillment of the requirements for the degree of Doctor of Education By Rachel Kallem Whitman May 2017 Copyright by Rachel Kallem Whitman 2017 DUQUESNE UNIVERSITY SCHOOL OF EDUCATION ED.D. IN EDUCATIONAL LEADERSHIP Dissertation Submitted in Partial Fulfillment of the Requirements For the Degree of Doctor of Education (Ed.D.) Presented by: Rachel Kallem Whitman M.S.Ed., Duquesne University, 2011 B.A., University of Virginia, 2007 February 23, 2017 PERCEPTIONS OF DISABILITY, IDENTITY, AGENCY, GOAL ATTAINMENT, AND YOUNG ADULT DISABILITY PROGRAMS _______________________________________, Chair Rick R. McCown, Ph.D. Professor, Department of Educational Foundations and Leadership and Pierre Schouver C.S.Sp. Endowed Chair in Mission Duquesne University ________________________________________, Member Connie M. Moss, Ed.D. Associate Professor, Department of Educational Foundations and Leadership Duquesne University _______________________________________, Member Elizabeth Miller, M.D., Ph.D Chief, Division of Adolescent and Young Adult Medicine Children’s Hospital of Pittsburgh of UPMC Program Director Connie M. Moss, Ed.D. Associate Professor, Department of Educational Foundations Leadership and Director, Ed.D. in Educational Leadership Program Duquesne University School of Education iii ABSTRACT PERCEPTIONS OF DISABILITY, IDENTITY, AGENCY, GOAL ATTAINMENT, AND YOUNG ADULT DISABILITY PROGRAMS By Rachel Kallem Whitman May 2017 Dissertation supervised by Dr. Rick McCown Youth with disability are oppressed and marginalized by a dominant cultural narrative called ableism (Adams, Reiss, and Serlin, 2015; Campbell, 2015 as cited in Adams et al., 2015). Challenging ableism is a matter of social justice. Without serious attitudinal shifts and the removal of systemic barriers, our youth with disabilities will continue to experience negative outcomes and underdeveloped agency. This study was conducted to provide a more detailed look into how adults with disabilities, who participated in disability advocacy programs as youth, perceive their past involvement with such programs in relation to defining their disability, identity, and capacity for agency. In addition, the study sought to assess the relevance of disability-positive environments based on participants’ perceptions. The study’s primary research question was: How and to what extent do youth with disabilities perceive disability advocacy iv programs in Pittsburgh as disability-positive environments? The supplemental research question was: How do young professionals with disabilities perceive and describe living with a disability, developing an identity, and maturing as an agent in the context of past participation in a disability advocacy program? Ten participants were included in the study. Participants were young professionals with disabilities recruited through the researcher’s advocacy network. This study collected qualitative data through semi-structured, in-person interviews. Data were organized and analyzed using Template Analysis; contextualized through the parameters of social cognitive theory, the youth-adult partnership model, and principles of disability- positive environments. The following major themes emerged from the interview data: (1) their seminal experiences with disability as children and as young adults; (2) how they cultivated, defined, and internalized their disability-identity; and (3) how their sense of purpose and achievements provided context for future plans. The concept of disability-positivity, social cognitive theory, and the history of youth-adult partnerships were used as frames to organize the findings into a model called, the Path of Advancement for Development of Positive Disability-Identities model. This model captures the four stages the interviewees experienced during their transition from adolescence to young adulthood. The stages cover avoidance of disability, self-defining epiphanic experiences, established individualized goals and roles, and the accumulation of these experiences, perceptions, accomplishments, and action plans are represented by stage four, the actualization of positive disability-identities. This study found that the development of agency was not situated in any particular advocacy program. Rather, the interviewees’ perceptions of agency and their v experiences as individuals with disabilities living in an ableist society were woven into an organized narrative that shaped an understanding of disability, identity, and forged a driving sense of purpose that translated into achieving meaningful goals. The dissertation ends with my agenda as an educational leader: to create a cross-disability advocacy collective that will empower, partner, and amplify strong, new disability narratives with the objective of replacing ableism with agency. vi TABLE OF CONTENTS Page Abstract ............................................................................................................................... ii Chapter 1: Framing Disability and Disability-Positive Environments ............................... 1 A Society of Staircases ................................................................................................... 7 Ableism. ...................................................................................................................... 8 Ableist models of disability. ....................................................................................... 8 Disability-positive counter narratives. ........................................................................ 9 Interpreting Disability ................................................................................................... 10 Validating the disability experience.......................................................................... 11 Respecting disability culture. .................................................................................... 12 Nurturing disability narratives. ................................................................................. 13 Foundation for My Work .............................................................................................. 13 Conscientious reflection and narrative...................................................................... 13 Youth-adult partnerships. .......................................................................................... 15 Exploring Disability-Positive Frameworks................................................................... 16 Agency. ..................................................................................................................... 16 Inclusion. ................................................................................................................... 17 Social justice. ............................................................................................................ 18 Research objective. ................................................................................................... 18 Call to the Work: Personal, Educational, and Professional Experiences ...................... 19 Chapter 2: The Problem and the Problem of Practice....................................................... 22 Experiencing Disability: Literature Review ..................................................................... 22 vii Access: A Critical Component...................................................................................... 22 Education and employment....................................................................................... 22 Accommodations. ..................................................................................................... 24 Access as an aspect of citizenry. ............................................................................... 26 Financial opportunity ................................................................................................ 27 Agency and Stigma ....................................................................................................... 28 Disability and Inalienable Rights ...................................................................................... 30 Beginning of disability activism. .............................................................................. 31 Activism and legal action.......................................................................................... 32 Visibility for the disability community. .................................................................... 34 The Practice of Leadership ..........................................................................................
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