BUILDING THE NORMAL BODY: DISABILITY AND THE TECHNO-MAKEOVER A DISSERTATION SUBMITTED TO THE FACULTY OF THE GRADUATE SCHOOL OF THE UNIVERSITY OF MINNESOTA BY EMILY SMITH BEITIKS IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY ADVISERS: CARL ELLIOTT AND RODERICK FERGUSON APRIL 2012 EMILY SMITH BEITIKS, 2012, © Acknowledgements One of the lessons I have learned from disability studies is to embrace the benefits of interdependence over independence and writing a dissertation proved a perfect way to implement this philosophy. I am so fortunate for my support network and take pleasure in the opportunity to name some of the people that have helped me on this journey. At UC Davis, I was extremely fortunate to have two mentors, Carolyn de la Peña and Cathy Kudlick, who introduced me to the passions that I explore in this dissertation. Though they had every right to part ways with me when I left Davis, I was spoiled rotten to have their ongoing support throughout grad school. Cathy served on my dissertation committee from afar, always pushing me to reach farther. As a grad student at the University of Minnesota, I was extremely fortunate to gain a family away from home with my cohort, my critical peeps: Karissa White, Jasmine Kar Tang, Cathryn Merla Watson, and Jessica Giusti. I am inspired by their work and grateful for their friendship. Friends who have been particularly supportive of my work since its beginning include Jessyca Crews, Danielle Watson, Chris Calice, Nicole Aranda, Tommie Knight, Katie Rooney, Heather McKerrow, Anne Marie Bookwalter, and Katie Hicks. Several colleagues (and friends) have also been instrumental in pushing my research in new directions and providing useful feedback along the way: Anastasia Kayiatos, Thea Gold, Erica Hawk, Emily Murai, Charlotte Albrecht, Dominika Bednardska, Sarah McCullough, Bess Williamson, Denise Nepveux, and Cindy Wu. I am grateful as well to the Mark and Judy Yudof fellowship award and P.E.O International. After three years in Minnesota, I returned to San Francisco to complete my i dissertation, leaving behind my cohort, but was extremely lucky to be welcomed into another with Martine Lappé and Katie Hasson. Together, we have held each other up through the final stretch. Another unexpected reward in my return to California was stumbling upon the Center for Genetics and Society. Thank you to my colleagues Emily Stehr, Doug Pet, Charles Garzon, Pete Shanks, Osagie Obasogie, Marcy Darnovsky, and Rich Hayes, who have supported the dissertation as my “second job” outside of CGS. At the University of Minnesota, both Patrick McNamara and Karen-Sue Taussig served on my committee, and I am grateful for their feedback. In addition, I thank them for the courses they taught, which introduced me to new concepts and scholarship that are central to my project today. I owe particular thanks to my two advisers, Roderick Ferguson and Carl Elliott. Rod helped me find my place within American studies and took me on despite his large amount of advisees with work more closely related to his own than mine. Long before I met Carl, his book Better than Well prompted me to write my undergraduate thesis and go to graduate school, yet I did not know he was at the University of Minnesota until after I arrived. How lucky to find such a supportive, funny adviser with such an inspiring amount of integrity. I carry his lessons on “how to be an academic failure” forward with me. Last but not least, thank you to my supportive family – the Smith, Beitiks, and O’Donnell clans. And most of all, thank you to my husband, Mikelis. In addition to tolerating daily rants about Extreme Makeover: Home Edition and the like, his feedback, laughter, and love have helped me stick with this. ii Table of Contents INTRODUCTION Neither Cyborgs Nor Technotards 1 CHAPTER ONE What Makes Do Good TV So Good?: Popular Culture and the Techno-Makeover 21 CHAPTER TWO ‘Developing’ Nations and ‘Undeveloped’ Limbs: The Techno-Makeover Reaches the Global South 75 CHAPTER THREE Bringing Disability Back from the Future: Michael J. Fox and the Debate over Embryonic Stem Cell Research 112 CHAPTER FOUR Not Seeing Eye to Eye: The Rise and Fall of the iBOT 162 CHAPTER FIVE Window Shopping at the Mall of Handicapitalism 197 CONCLUSION The Techno-Makeover’s Future in Biotech 231 WORK CITED 241 iii Introduction: Neither Cyborgs nor Technotards In July 2011, Oscar Pistorius, known as “Blade Runner” for his two prosthetic legs, qualified to run and compete in the world track championships against the best able- bodied runners alive — a story that has been extensively covered in the U.S. media.1 Two months earlier, a similar story made international headlines; Austin Whitney, a paraplegic, used a robotic full-body suit called an “exoskeleton” to walk across the stage and accept his diploma to graduate from UC Berkeley.2 You can read these stories in the local news and watch them on reality television shows like Extreme Makeover: Home Edition and The Oprah Winfrey Show. These stories, of people with disabilities enhanced by technology who overcome barriers and inspire us all, are quite common, even if the stories’ narratives claim that these cases are quite extraordinary. My goal is to flesh out just how common these stories are and explore the cultural purpose they serve. Technologies meant to normalize disabilities are promoted as a vision of progress, but I argue technological progress does not equal social progress. Many of the problems people with disabilities face stem not from a lack of nuts and bolts to provide a technological fix, but rather from social discrimination, inequality, and inaccessibility that results from living in an environment built for an able-body. However, these stories of “triumph over adversity,” made possible through technology, obscure this fact. The narratives promote a neoliberal agenda, in which privatized 1 Andy Bull, “Humbled Pistorius Says He Never Expected to Make the 400M Final,” Guardian, August 29, 2011. http://www.guardian.co.uk/sport/2011/aug/29/oscar-pistorius-400m-final. 2 Nanette Asimov, “Exoskeleton Lets UCB Grad Take Big Step,” SF Chronicle, May 15, 2011. http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/05/14/BARO1JFEP8.DTL 1 technological consumption is capable of solving the problems of disability, rather than have us address discrimination or offer social assistance. Of course, the question of a body intertwined with technology is not limited to disabled communities. From machines in the workforce to luxury technologies like cell phones and iPods, it has become rare to encounter a body in the United States today that is not in some way intimately intertwined with technology, though the types of technologies vary greatly with social status. As science and technology continue to develop at an accelerating rate, each year brings new possibilities for what we can do as humans and to humans. We often use technology and science to expand the limits of the body, to help us go to new places previously impenetrable, to keep us alive at times when we otherwise would have perished, and to optimize our bodies to do new things imagined in the science fiction of the past. Innovations in science and technology have a profound impact on all of our bodies, what they can do and what we are culturally expected to do with them once a new innovation becomes routine and integrated into our culture. Many of these changes have improved humanity in praiseworthy ways, but not all. The abundance of stories of people with disabilities altered and “made better” by technology is inseparable from this wider rise in biotechnology-merged bodies. In part, this intersection is obvious — some of the innovations that have come have been for people with disabilities, so technologies like Pistorius’s prostheses or the exoskeleton are circulating because they mark technological progress. “Assistive technology” refers to any device used by a person with a disability to help with the challenges posed by impairment, and the assistive technology industry has experienced rapid growth in the past thirty years. Yet, the hunch with which I began this project is that these celebrations 2 of disability technology circulate for a secondary purpose as well. As all of our bodies become intertwined with technologies in new interdependent ways, I believe we may be looking to people with disabilities to feel out what it means to rely on technology. These stories of people with disabilities and technological body modifications are made to sanitize our understanding of both disability and technology, but this story is misleading, certainly in the case of disability technology. What does it mean to intimately rely upon technology and how will this be changing as we become even more high-tech in the future? Do people with disabilities relate to technology differently than able-bodied people do? These questions have been taken up by scholars, though primarily in superficial ways. A large amount of research into the body/machine interface stemmed off of the work of feminist science studies scholar Donna Haraway. She suggested that we can liberate marginalized people through reclaiming technoscience hybridized with the body in her foundational essay, “A Manifesto for Cyborgs,” giving birth to an abundance of cyborg studies scholarship or “cyborgology.”3 Haraway appropriated the cyborg from its scientific origins and defines it to include any boundary breakdown between human and animal, animal/human and machine, and the physical and non-physical, recognizing the pervasive ways that bodies are hybrids, which cannot be understood as “whole” or “pure.” She then argues that in the cyborg figure, we can recode and rewrite its text, allowing an escape for people living in bodies already written as “Other,” including women, people of color, laborers, and/or the colonized, making her well known claim, 3 Donna J.