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` Stretched to the Limit: Organizations for Short Statured People and the Management of Stigma ` STRETCHED TO THE LIMIT: ORGANIZATIONS FOR SHORT STATURED PEOPLE AND THE MANAGEMENT OF STIGMA by Leslie M. Rott A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy (Sociology) in The University of Michigan 2013 Doctoral Committee: Associate Professor Renee Anspach, Chair Professor Raymond DeVries Assistant Professor Sandra Levitsky Professor Karin Martin Associate Professor Shobita Parthasarathy © Leslie M. Rott 2013 Dedication Dedicated to my parents for encouraging me to stand tall and proud, despite my short stature. And for having the wisdom and foresight not to pander to society’s pressures to conform, and to not treat me with growth hormone. And to those who have faced difficulties because of their stature, know that you are more than just the feet and inches your body is composed of. Never give up on the beauty of your dreams. ii Acknowledgments The road toward this dissertation and PhD has been long and difficult. There are many people I must thank, for which the journey of getting a PhD and finishing this dissertation would not have been possible. To my parents, Neal and Susan Rott, for your unending support. It was a difficult road, but we all survived, and I think you’ll agree, are stronger on the other side. This journey would not have been able to happen if it were not for you teaching me the value of a strong work ethic, and the necessity to see things through until the end. Early on you taught me the value of education and the importance of finding something to be passionate about. As an undergraduate at the University of Michigan, I found that passion in sociology. And while, as parents, you could have suggested that I find a more “useful” field, you encouraged me to follow my heart. These are lessons that will stay with me forever, and I am so glad to call you my parents. To my sister, Molly Rott, for providing endless joy, laughter, and fun. You are an integral part of my life and I am so lucky to have you as a sister. To my Bubbie and Zaydie, Eva and Manuel Rott, for your unending faith in me. You have taught me the importance of love and family, and have been huge supporters since the moment I was born. I am so proud to be your granddaughter. And to my aunt, Nancy Rott, for always encouraging and supporting me. iii To the participants in this research, I will forever be grateful to you for allowing me an inside look at your organizations, the people in them, and the lives they live. I feel that along with providing me with the data from which to write this dissertation, you also helped me see inside myself and learn more about myself. To Renee Anspach – advisor, mentor, and friend. Your advice, guidance, and insightful comments have been invaluable and have helped to dramatically improve this dissertation. Your support through both the completion of this degree and personal issues alike, have gotten me through the darkest of times, and has meant the world to me. I also appreciate the feedback and support of the other members of my dissertation committee: Sandy Levitsky, Karin Martin, Ray DeVries, and Shobita Parthasarathy. I could not have asked for a better combination of expertise or a more supportive committee. Special thanks to Sandy for helping me to navigate and grasp the social movements literature, which was new to me before I began this dissertation. I would be remiss not to thank people in the broader university community who have helped me throughout my time at Michigan. Natalie Bartolacci, Darlene Ray- Johnson, Susan Mann, Sharon Mudd, Mark Sampson, and Carol Tucker, have all been supporters in various ways. You have made this journey undoubtedly better. Dr. Blake Roessler, for always answering my questions over e-mail, and for providing me with the best possible care. I could not have survived graduate school and lupus and rheumatoid arthritis if it were not for your stalwart drive to help get my illnesses under control. Also thanks to the rest of my medical team for the guidance you have provided, especially Dr. Bonnie Bayne and Dr. Janice Farrehi, who were indispensable in coordinating my primary care. iv People in the Sociology program that have helped, encouraged, and supported me along the way: Amanda Ashman, Heather Camhi, Rosalyn Denise Campbell, Amy Cooter, Danielle Czarnecki, Laura Hirshfield, David Hutson, Zakiya Luna, Terry McGinn, Carla Pfeffer, Pat Preston, and Jeannie Worrall. Special thanks to Andrea Crosby, Erica Engler, Dana Jackman, Elyse Jennings, Katie Pethan, Daniela Pineda, Rachel Sisco, and Jennifer Steiner Tonks. A person could not ask for a better group of girlfriends. Maria Pfeifer for being my “lupus mom”. You have not only understood the complications that come with lupus, but also the complications that come with being a graduate student, pursuing a PhD, and living with a chronic illness. You are a true inspiration to me and I am so grateful for your friendship and support. In terms of family and friends, I have tried to include everyone here, but to those who have helped and supported, and I have not mentioned, thank you. To the Katz clan for making me feel like a part of the family from the very beginning. On this graduate school journey, you hope that you will find someone to share the journey, and ultimately, life with. Andrew Katz, I found that person in you. You were incredibly patient and understanding in accepting your girlfriend in many forms throughout the writing of this dissertation, although I am still trying to get you to understand that “Midget” is not politically correct. Aside from that, I cannot wait to see what the future holds for us. I am so lucky to have found you. v Finally, this dissertation is in loving memory of Dr. Arthur Rott and Jeffrey Yellen, two true menches. You are missed every day, and inspire a life well lived, though certainly not long enough. vi Table of Contents Dedication ........................................................................................................................... ii Acknowledgments.............................................................................................................. iii List of Appendices ........................................................................................................... viii List of Abbreviations ......................................................................................................... ix Abstract .............................................................................................................................. xi Chapter 1 : Introduction ...................................................................................................... 1 Chapter 2 : Little People of America (LPA) ..................................................................... 29 Chapter 3 : MAGIC Foundation ....................................................................................... 86 Chapter 4 : National Organization of Short Statured Adults (NOSSA) ......................... 134 Chapter 5 : Conclusion.................................................................................................... 161 Appendices ...................................................................................................................... 182 References ....................................................................................................................... 210 vii List of Appendices Appendix A : Case Studies of Interviewees ................................................................... 182 Appendix B : Organization Comparison Chart ............................................................... 197 Appendix C : List of Short Stature and Deaf Organizations .......................................... 199 Appendix D : Background on Human Growth Hormone (hGH) and Extended Limb Lengthening (ELL) ......................................................................................................... 201 viii List of Abbreviations ACHON – Achondroplastic Dwarf ADA – Americans with Disabilities Act ADD – Attention Deficit Disorder ADHD – Attention Deficit Hyperactivity Disorder AH – Average Height ASL – American Sign Language ATM – Automatic Teller Machine CGD – Constitutional Growth Delay CJD – Creutzfeldt-Jakob Disease CLL – Cosmetic Limb Lengthening CPAP – Continuous Positive Airway Pressure DAAA – Dwarf Athletic Association of America DPN – Deaf President Now DVT – Deep Vein Thrombosis EHMs – Embodied Health Movements ELL – Extended Limb Lengthening FCC – Federal Communications Commission FDA – Food and Drug Administration GH – Growth Hormone ix GHD – Growth Hormone Deficiency HGF – Human Growth Foundation HGH – Human Growth Hormone HSMs – Health Social Movements IRB – Institutional Review Board ISS – Idiopathic Short Stature IVF – In Vitro Fertilization LP – Little Person or Little People LPA – Little People of America MAGIC – Major Aspects of Growth in Children MRI – Magnetic Resonance Imaging NAAFA – National Association to Advance Fat Acceptance NIH – National Institutes of Health NOSSA – National Organization of Short Statured Adults PGD – Pre-implantation Genetic Diagnosis PSA – Public Service Announcement SIDS – Sudden Infant Death Syndrome SPS – Short Persons Support TLC – The Learning Channel x Abstract Stretched to the Limit: Organizations for Short Statured People and the Management of Stigma by Leslie M. Rott Chair: Renee Anspach While there has been a significant amount of work in the sociological literature looking at how short stature has become
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