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Emerging from the Shadows: a Case Study on the Quality of Life of Students with Disabilities in Monrovia, Liberia

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Emerging from the Shadows: a Case Study on the Quality of Life of Students with Disabilities in Monrovia, Liberia ABSTRACT Title of Document: EMERGING FROM THE SHADOWS: A CASE STUDY ON THE QUALITY OF LIFE OF STUDENTS WITH DISABILITIES IN MONROVIA, LIBERIA Kimberly Podzimek Doctor of Philosophy, 2014 Directed by: Professor Jing Lin Department of Education Leadership, Higher Education and International Education People with disabilities are often the last group to be included in development agendas. For children with disabilities, this translates into exclusion in the educational setting with piecemeal agendas created by various governments. In Liberia, children with disabilities are not only excluded from the classroom, but the government’s most recent education law singles children with disabilities out as individuals that may be excluded from the classroom. It is difficult to find research on people with disabilities in low-income countries that have experienced recent conflict. In an attempt to better understand the lives of children with disabilities in Liberia, I developed and implemented a case study the examines the lives of families with children with disabilities at an educational center in Monrovia, Liberia called The Alliance Center for Children with Disabilities1, hereafter referred to as the Center. I used Schalock and Keith’s (2000) Quality of Life (QOL) Framework to gauge the influence the Center has over the lives of the families and Critical Disability Theory as a base for a discussion on societal norms and people with 1 This is a pseudonym to protect the identities of my participants and their families. disabilities. Through intense analysis of interview transcripts, documents and observations, this study concludes that the families associated with the Center currently have a better quality of life based on the domains in Schalock and Keith’s (2000) Quality of Life framework than those with children with disabilities not attending the Center. QUALITY OF LIFE RESEARCH ON STUDENTS WITH DISABILITIES IN MONROVIA, LIBERIA By Kimberly Podzimek Dissertation submitted to the Faculty of the Graduate School of the University of Maryland, College Park, in partial fulfillment of the requirements for the degree of Doctor of Philosophy 2014 Advisory Committee: Professor Jing Lin, Chair Professor Steve Klees Professor Paula Beckman Professor Tom Davis Professor Linda Valli © Copyright by Kimberly Podzimek 2014 ii Dedication Many, many people helped to make this research possible, both through emotional and more tangible support. However, I would like to dedicate this to the most important people in this research, the families and staff at the Alliance Center for Children with Disabilities. The people at the Center face seeming insurmountable odds, but they impressed me with their compassion and sense of purpose on a daily basis. The children at the Center will be in my heart forever and I miss my life in Liberia daily. iii Acknowledgements I would like to acknowledge my friends, especially Glory, Alicia and Charles, my family, especially my mom, and the facility at the University of Maryland, College of Education for their support at all levels of this process. I would like to specifically acknowledge Dr. Jing Lin for all her time and effort, from the meetings for discussing ideas to her edits and critiques of my dissertation. I would also like to acknowledge my committee for their time and effort in making this possible. Finally, I would like to acknowledge all the hard- working people in Liberia trying to create more opportunities for people with disabilities. iv Table of Contents Chapter One Introduction to the Research...................................................................................... 1 Statement of the Problem ............................................................................................................ 1 Research Question and Purpose .................................................................................................. 4 Significance of the Study ............................................................................................................ 5 Definitions................................................................................................................................... 6 Descriptions of Disabilities in the Study..................................................................................... 9 Personal Connection to the Topic ............................................................................................. 12 Organization of the Study ......................................................................................................... 13 Chapter Summary...................................................................................................................... 13 Chapter Two Literature on Disability: Critical Disability Theory and Quality of Life Research........................................................................................................................................ 15 Education and Disability ........................................................................................................... 17 Economics of Disability............................................................................................................ 20 Successful Programs in Helping People with Disability........................................................... 21 Theories on Disability ............................................................................................................... 23 Quality of Life Research ........................................................................................................... 35 Chapter Summary...................................................................................................................... 48 Chapter Three The Context: Liberia............................................................................................. 49 Impact of the War on Liberians................................................................................................. 52 Liberia in Development............................................................................................................. 55 Disability in Liberia .................................................................................................................. 57 Education in Liberia.................................................................................................................. 59 v Education and Disability in Liberia .......................................................................................... 64 Chapter Summary...................................................................................................................... 70 Chapter Four ................................................................................................................................. 71 Research Methodology: A Qualitative Case Study ...................................................................... 71 Setting and Rationale ................................................................................................................ 74 Participant Selection.................................................................................................................. 77 Research and Disability............................................................................................................. 78 Data Collection Procedures and Analysis ................................................................................. 79 Chapter Summary...................................................................................................................... 94 Chapter Five.................................................................................................................................. 95 The Center, the Children and the Families: Finding Hope in Impossible Situations ................... 95 Profiles of the Students: Upper Class........................................................................................ 96 Profiles of the Students: Lower Class ..................................................................................... 151 Chapter Summary.................................................................................................................... 182 Chapter Six.................................................................................................................................. 183 Analysis on the Center and the Quality of Life of the Students ................................................. 183 Emotional Well-Being: Safety, Spirituality, and Happiness................................................... 185 Personal Development: Education, Skills, and Fulfillment. ................................................... 189 Physical Well-Being: Health, Nutrition, Recreation, and Mobility ........................................ 190 Social Inclusion: Acceptance, Status, Supports, and Work .................................................... 192 Inter-Personal Relations: Intimacy, Affection, and Family .................................................... 198 Material Well-Being: Ownership, Financial Security, and Food............................................ 200 Self-Determination: Autonomy, Choices, and Decisions ....................................................... 205 vi Rights: Privacy, Voting, and Access....................................................................................... 207 Explainations for the Overall Levels of Influence .................................................................
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