The University of San Francisco USF Scholarship: a digital repository @ Gleeson Library | Geschke Center Doctoral Dissertations Theses, Dissertations, Capstones and Projects 2014 Perspectives on Disability and Community Engagement in Albania: Developing Mutual Understanding Through the Sharing of Individual Narratives Lucia Murillo University of San Francisco, [email protected] Follow this and additional works at: https://repository.usfca.edu/diss Part of the Education Policy Commons Recommended Citation Murillo, Lucia, "Perspectives on Disability and Community Engagement in Albania: Developing Mutual Understanding Through the Sharing of Individual Narratives" (2014). Doctoral Dissertations. 100. https://repository.usfca.edu/diss/100 This Dissertation is brought to you for free and open access by the Theses, Dissertations, Capstones and Projects at USF Scholarship: a digital repository @ Gleeson Library | Geschke Center. It has been accepted for inclusion in Doctoral Dissertations by an authorized administrator of USF Scholarship: a digital repository @ Gleeson Library | Geschke Center. For more information, please contact [email protected]. University of San Francisco PERSPECTIVES ON DISABILITY AND COMMUNITY ENGAGEMENT IN ALBANIA: DEVELOPING MUTUAL UNDERSTANDING THROUGH THE SHARING OF INDIVIDUAL NARRATIVES A Dissertation Presented to The Faculty of the School of Education Department of Leadership Studies Organization and Leadership Program In Partial Fulfillment of the Requirement for the Degree of Doctor of Education By Lucia Murillo San Francisco, CA May 2014 THE UNIVERSITY OF SAN FRANCISCO Dissertation Abstract Perspectives on Disability and Community Engagement in Albania: Developing Mutual Understanding Through the Sharing of Individual Narratives Research Topic This study explores current perspectives on disability in Albania by bringing into discourse the voice of families and community members in order to learn how history, tradition, and family values influence individual or community response to having or being in community alongside children with special needs. Research Theory and Protocol I carried out this research using critical hermeneutic theory. The protocol followed an interpretive approach as outlined by Ellen Herda (1999). This orientation brought the researcher and participants together and used narratives as a medium for participatory inquiry. Research Categories The critical hermeneutic concepts of narrative identity, mimesis, and communicative action were used to guide my research. Narrative identity (Ricoeur 1992) is important in helping to understand how history, traditions, and family values have influenced personal stories. Mimesis (Ricoeur 1984) addresses the temporal aspect of our lives by recognizing the influence of past and future in our present. Communicative action (Habermas 1984) emphasizes the use of discourse in community to help reach mutual understanding. ii Findings Data analysis revealed the following findings: (1) personal experiences with disability motivated participants to begin to question traditional family roles and social response; (2) the concept of disability is not well understood and is a topic that was not typically discussed in families and communities; (3) public awareness campaigns are desired as a way to increase the understanding of disability issues. iii This dissertation, written under the direction of the candidate’s dissertation committee and approved by the members of the committee, has been presented to and accepted by the Faculty of the School of Education in partial fulfillment of the requirements for the degree of Doctor of Education. The content and research methodologies presented in this work represent the work of the candidate alone. Lucia Murillo April 22, 2014 Candidate Date Dissertation Committee Dr. Christopher Thomas April 22, 2014 Co-Chairperson Date Dr. Maria Palmo April 22, 2014 Co-Chairperson Date Dr. Caryl Hodges April 22, 2014 Date iv ACKNOWLEDGEMENTS My research was made possible by the gracious individuals in Albania who not only shared their stories with me, but welcomed me into their homes and communities. To the staff at the Regional Autism Center, particularly Entela Vakiari and Erjona Capari, thank you for opening your center to me and allowing me to learn about the great work you are doing for children and families. To the Kllomollari family, who hosted me in Albania, spent countless hours supporting my data collection process, and secured interpreters, I give my sincere gratitude. Additionally, your kind hospitality, representative of the Albanian culture, made me feel like I was part of the family. For the introduction into the world of critical hermeneutic theory, I thank Dr. Ellen Herda. There is no doubt that I have grown as a person as a result of learning to use critical hermeneutics as a lens through which to view the world. I also give thanks to my committee members: Dr. Maria Palmo, who dedicated immeasurable time supporting and guiding me through the writing process, Dr. Christopher Thomas who provided encouragement and always made himself available to me for consultation and guidance, and Dr. Caryl Hodges whose perception and knowledge provided valuable reflection opportunities for me in completing my dissertation. Finally, to my friends and family who have been patient and supportive as I pursued my educational goals over the years, thank you for being there. In those moments when I allowed myself to doubt my ability to make it to the end, your assurance that I was more than capable gave me the strength I needed to continue in my path forward. v CONTENTS DISSERTATION ABSTRACT .................................................................................... ii ACKNOWLEDGMENTS ............................................................................................. v LIST OF FIGURES ....................................................................................................... x LIST OF TABLES ........................................................................................................ xi CHAPTER ONE: STATEMENT OF THE ISSUE ...................................................... 1 Introduction ................................................................................................................. 1 Statement of Issue ........................................................................................................ 3 Discussion of the Issue................................................................................................. 4 Significance of the Issue .............................................................................................. 7 Summary ..................................................................................................................... 8 CHAPTER TWO: COUNTRY BACKGROUND ........................................................ 9 Introduction ................................................................................................................. 9 Geography and Ethnic Origins ..................................................................................... 9 Culture and Environment ........................................................................................... 10 Political History ......................................................................................................... 12 Economy ................................................................................................................... 13 Education .................................................................................................................. 14 Summary ................................................................................................................... 16 CHAPTER THREE: REVIEW OF THE LITERATURE ......................................... 17 Introduction ............................................................................................................... 17 Section One: Anthropological Literature .................................................................... 17 Edith Durham: Customs and Traditions of Albania ................................................. 17 Victor Turner: Community Structure and Transitions ............................................. 19 Clifford Geertz: Meaning is Public ......................................................................... 20 Section Two: Disability and Special Education .......................................................... 21 International Efforts Toward Disability Rights........................................................ 22 Albanian Educational Structure .............................................................................. 23 Special Education System in Albania ...................................................................... 24 Moving Toward Inclusion in Education .................................................................. 27 Teacher Training and Curriculum Development ..................................................... 30 Section Three: Culture, Community and Inclusion ..................................................... 31 Building Relationships and Encouraging Participation ............................................ 32 Addressing Disability in Albania ............................................................................ 35 Summary ................................................................................................................... 37 vi CHAPTER FOUR: RESEARCH THEORY AND PROTOCOL