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A Thesis Parenting Children with Profound Short Stature in the Post A Thesis Parenting Children with Profound Short Stature in the Post-Genomic Era by Anna G. Neller Submitted to the Graduate Faculty as partial fulfillment of the requirements for the Master of Arts Degree in Sociology ________________________________________ Dr. Mark Sherry, Committee Chair _______________________________________ Dr. Shahna Arps, Committee Member ________________________________________ Dr. Elias Nigem, Committee Member ________________________________________ Dr. Amanda Bryant-Friedrich, Dean College of Graduate Studies The University of Toledo August 2016 Copyright 2016, Anna Grace Neller This document is copyrighted material. Under copyright law, no parts of this document may be reproduced without the expressed permission of the author. An Abstract of Parenting Children with Profound Short Stature in the Post-Genomic Era by Anna Neller Submitted to the Graduate Faculty as partial fulfillment of the requirements for the Master of Arts Degree in Sociology The University of Toledo August 2016 Previous social science research on profound short stature has primarily centered studies on Achondroplasia – with limited attention being given to other conditions which result in profound short stature such as Osteogenesis Imperfecta, Growth Hormone Deficiency, and other conditions which may be placed under the generic label “Failure to Thrive.” This thesis is the first attempt to engage in an interdisciplinary analysis of new diagnostic conditions associated with profound short stature. Employing a grounded theory approach, this study draws from multiple sources of data, including insider research; and seeks to answer the primary research question: what can parents of children with profound short stature teach us about their children’s experiences in the post- genomic era? Results of this study include the complicated, ongoing process of diagnosing, the infantilization, dehumanization and violence experienced by children with profound short stature, barriers in education and their psychosocial effects, and the diversity of identities adopted by parents in describing their children. In conclusion, recognizing the variety of iii diagnoses which underlies the community of children with profound short stature is a key step in developing a more holistic perspective that integrates interconnected social, psychological, ethical, medical, disability and embodied issues. iv For Ethan and Jacob, the lights of my world Acknowledgements Reach towards something so difficult it requires all of your potential. (Diana Nyad) At the heart of this thesis are the stories of parents with children who are profoundly short. Their complex narratives provide glimpses of the social barriers, triumphs, and struggles with identity that impaired children and their families experience. I am extremely grateful for these parents and their children. I would not have able to establish such relationships with these families without the MAGIC Foundation’s support. The organization’s generosity with their time and resources was crucial for connecting to these families. Additionally, I am appreciative of the members of Little People of American (LPA) who provided information on the many facets of Little Peoples’ lives. This thesis would have not existed without the guidance and boundless energy of Dr. Mark Sherry. His consistent support, intellectual insights, and wonderful mentorship encouraged me to continuously pursue excellence and social justice despite emerging challenges. Likewise, Dr. Shahna Arps and Dr. Elias Nigem provided very useful insights and encouragement that were important for the crafting of this work. My family’s confidence in me sustained a steadfast spirit of perseverance. I am extremely thankful for their patience, particularly my sons Ethan and Jacob whose own individual and collective plights with restricted growth inspired my pursuit of disability rights. v i Table of Contents Abstract .............................................................................................................................. iii Acknowledgements ..............................................................................................................vi Table of Contents .............................................................................................................. vii List of Tables ................................................................................................................. viii List of Abbreviations ...........................................................................................................x 1 Introduction… ..........................................................................................................1 1.1 Importance of the topic ......................................................................................3 1.1.1 An important and underexplored issue ...............................................3 1.1.1.1 Exploring unique dynamics of families with disabled….. 2 Theoretical Framework ..........................................................................................28 1.2 Introduction…. ...................................................................................…..……28 1.2.1 Social Model of Disability ...............................................................29 1.2.2 Minority model of disability ................................................39 3 Methods..................................................................................................................55 1.3 Introduction ......................................................................................................55 1.4 Qualitative Methods .........................................................................................55 1.5 Grounded Theory .............................................................................................56 1.6 Key Research Question………………………………………………………57 1.7 Subsidiary Questions………………………………………………………...57 vii 1.8 Sources of data ................................................................................................58 1.8.1 Insider research .................................................................................58 1.8.2 Pilot interviews ......................................................................63 4 Results and Analyses .............................................................................................74 1.9 Disability……………………………………………………………………..75 2.0 Impairment effects…………………………………………………………...78 2.1 Diagnoses…………………………………………………………………….82 2.2 Disability identities…………………………………………………………..86 2.3 Normalization, Medicalization and Biopolitics……………………………...89 2.4 Issues not identified in previous research……………………………………93 2.4.1 Individuality………………………………………………………..93 2.4.2 Maternal blame…………………………………………….96 5 Conclusion ...........................................................................................................106 References ........................................................................................................................116 A Glossary of Medical Terminology .......................................................................111 viii List of Tables 1.1 SEAwall of Institutional Discrimination First Table in Chapter 2 ........................32 ix List of Abbreviations GI Specialist ...............Gastroenterologist HGD ...........................Human Growth Hormone Deficiency IUGR ..........................Intrauterine Growth Restriction LPA ............................Little People of America OI ...............................Osteogenesis Imperfecta PWD ...........................People with Disabilities RSS ............................Russell-Silver syndrome SGA............................Small for Gestational Age UPIAS ........................Union Of The Physically Impaired Against Segregation x Chapter 1 Introduction The post-genomic era, associated with the development of new diagnostic categories (and new advocacy organizations associated with these medical diagnoses) has prompted the need to re-explore many experiences of health, illness, and disability. This thesis is the first attempt to engage in an interdisciplinary analysis of new diagnostic conditions associated with profound short stature. The interdisciplinary framework adopted in this paper involves a combination of insights from medical sociology and bioethics (with regard to the power of normalization, medicalization and power, as well as two major theoretical frameworks from disability studies (the social and minority models of disability). Without such a holistic, interdisciplinary perspective, there is a serious failure to integrate the messy realities of interconnected social, psychological, ethical, medical, disability and embodied issues. Applied research on the social dynamics associated with profound short stature is rare; there are only a handful of published papers in the last ten years (Adelson, 2005; Guse & Harvey, 2010; Shakespeare, Thompson, & Wright, 2010). Each condition that leads to profound short stature has been studied in the medical literature (for instance, there are 1 medical studies on Russell Silver Syndrome, Turner Syndrome, and so on), but the topic is under-studied from a social science perspective. Unfortunately, previous social science research on profound short stature has been “chondrocentric” – primarily centering studies on Achondroplasia – with limited attention being given to other conditions which result in profound short stature. Conditions such as Osteogenesis
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