Restructuring Intersectionality with Disability: Reconceptualizing Cleft

Restructuring Intersectionality with Disability Reconceptualizing Cleft Lip and Palate A Thesis presented to the Feminist and Gender Studies faculty of The Colorado College in partial fulfillment of the requirements for the degree of Bachelor of Arts in Feminist and Gender Studies Marley V. Hamrick May 2012 I have read this thesis and agree that it meets the requirements for a Feminist and Gender Studies Thesis on thesis track: _______________________________________________ __________________ Ryan Platt Date _______________________________________________ __________________ Wade Roberts Date The following work is in compliance with the Honor System of the Colorado College. On my honor I have neither given nor received unauthorized assistance on this thesis. I have fully upheld the Honor Code of The Colorado College. _______________________________________________________________________ Marley Hamrick May, 2012 Acknowledgements I would like to acknowledge everyone who made this thesis possible. Thank you for your inspiration, insight, ongoing encouragement, mentorship, and endless patients. This thesis has been an incredible learning and growing experience, both academically and personally. I could not have traveled this journey without you all. Special thanks to Ryan Platt Wade Roberts Jessica Copeland Tomi-Ann Roberts Jamie Bell My dear family and friends Table of Contents Chapter Title Page Number 1 Introduction 1 2 Restructuring Intersectionality with Disability 5 2.1 Development of Intersectionality in Feminist Theory 8 2.2 Integrating Disability 12 3 The Forgotten Material Body 17 3.1 Defining Social Construction and Materiality 19 3.2 The Disabled Body and Materialism 22 4 Reconceptualizing Cleft Lip and Palate 29 3.1 Cleft Lip and Palate as a Disability 31 3.2 The Disease Regime of Cleft Lip and Palate 36 5 Conclusion: Reconceptualizing the Cleft Disease Regime 44 Bibliography 48 Appendix 55 1. Introduction Throughout grade school, my classmates were curious about the scars on my lip and nose. Pointing to their own lip, they would genuinely and curiously ask “what happened to your face?” I would explain that I was born with a cleft lip and nasal deformity, and that I had multiple surgeries to “fix” it. Occasionally, some of my peers could even predict my answer and simply wanted confirmation for their diagnosis. Not waiting for a response, they would explain that “you were born with a cleft lip like the kids in those pictures, right?” They were referring to the well known advertisements for organizations that provide surgery for children with cleft lip and/or palate transnationally who could not otherwise afford the medical care, such as Operation Smile. In the straightforward and yet insightful mind of children, I was categorized as part of a seemingly homogenous group of people with clefts. As an adult, I observed this same singular othering from a nurse with Operation Smile during a recent benefit concert. She described how children with clefts “are socially excluded” and have “broken smiles and broken spirits.” Attempting to provide support for this message, she told the story of a little boy born with a cleft in the global south. According to the nurse, the child was ashamed, depressed, and rejected because his life centered on what she called his “horrible deformity.” Yet after a simple 45 minute surgery from Operation Smile, he was a happy child and fully accepted by his community. To emphasize this message, a slide show of close-up pictures of the boy’s sad eyes and “horribly deformed” face played throughout the presentation. I was outraged that an American, white, middle class, medical professional spoke on behalf of and objectified the little boy. Although I know that my experience with a cleft has been significantly different from the boy based on our resources, cultures, and identities, I had a sense that he would tell his story much differently than the nurse. Following the event, I attempted to search for alternative narratives to conceptualize not only this particular child’s 1 experiences, but also my own. My frustration grew as I discovered the near absence of other narratives specific to our distinct contexts. My personal experiences echo a reoccurring battle that many feminists have fought even before the emergence of feminism in the academy--the pervasive conflation of a group of people without consideration of their differences. Specifically, progressive feminists have identified how hegemonic white, Western, middle class, straight, able-bodied feminists claimed to speak on behalf of all women. Hegemonic feminists employed the notion of a global sisterhood to suggest that “women” are a homogonous group united with universal political interests. Chandra Mohanty (1988) argued that this usage of “women” as a category of analysis results in a dangerously reductive understanding of “women” and their subordination. To address this problematic conflation, a number of feminists employed a particular “reading practice” as a tool to understand how different inequalities interact (Hong 2006, x). Kimberle Crenshaw (1989, 1995) entitled this tool “intersectionality” and argued that categories of difference such as gender, race, and class mutually intertwine in systems of oppression. The concept of intersectionality has proven to be perhaps “…the most important theoretical contribution that women’s studies…has made so far” (McCall 2005, 1771, cited in Nash 2008). Although an intersectional reading practice can assist in deconstructing the monolithic understanding of people with clefts, the current dominant feminist theory of intersectionality still falls short in conceptualizing the narrative of clefts. Feminist conceptions of intersectionality can make sense of the beauty norms regulated by surgically altering the clefts of children in poverty. They can also make sense of the neocolonialism of Western doctors “fixing” clefts of children of color in the global south. Yet feminist conceptions of intersectionality cannot comprehend surgical intervention for the complications of speech, hearing, eating, and breathing 2 faced by many children with clefts. Clefts force us to remember the relationship between individuals and their bodies. A number of scholars have argued that feminists exclude disability from theorization of intersectionality, which has significant structural consequences (Davis 1995, Garland-Thomson 2006, McCruer 2006, Morris 1993, Wendell 1989). As a result of this exclusion, feminists cannot fully conceptualize medically diagnosed conditions such as clefts. Tobin Siebers demonstrates that “the disabled body compels one to give concrete form to the theory of social construction” (2008, 331). He refers to how postmodern scholars have privileged a single framework for explanations of knowledge. They employ social constructionism, the theory that phenomenon are not essential, but rather constructed through social forces (Burr 2003, Hacking 1999). Although social constructionist theory has been highly beneficial to feminists in increasing women’s life opportunities, it has dismissed the bodily experiences of so many (Alaimo and Heckman 2008, Barad 2003). This perpetuates disablism, the oppression against people on the basis of perceived or actual disability through assuming able-bodied as the norm (Campbell 2008). How can feminist theorization overcome the disablism resulting from the exclusion of the body without overturning the advancements made by social constructionism? Disability Studies has struggled with this same challenge, as illustrated by the variety of definitions of disability. Early definitions of disable people, like the essentialist definitions of women, situated their “abnormality” within their natural bodies.1 This definition, also known as the individual model, problematically disregards the role of systems of oppression in even constructing disabled people 1 I will alternate between the terms “people with disabilities” and “disabled people” to honor the variety of opinions on disability language. While some disability activists prefer the former to demonstrate that a disability is a secondary attribute, other activists prefer the latter, claiming that “people with disabilities” implies shame and defensiveness on the topic. 3 as “abnormal” (Oliver 1996). To address this failing of the individual model of disability, activists coined the social model. In contrast to the individual model, proponents of the social model sought to “not just challenge attitudes…[but challenge] the very assumption of ‘normality’” (Hasler 1993, 280). Yet scholars have also identified this model as problematic for dismissing the corporeal components of disability central to the lived experience of people with disabilities (Hughes and Patterson 1996, Shakespeare 2006). Disability scholars proposed a new framework to overcome the limitations of these two dominant models. Lennard Davis (1995) and Rosemarie Garland-Thomas (1997) argued that scholars and activists should not ask if disability is situated in the body or society. Rather, they should ask how bodies and socially constructed norms interact to identify particular bodies as “abnormal.” Davis locates two modalities in which disabled bodies defy norms--function and appearance. I argue that clefts, despite their ambiguous relationship to the category of disability, fit into this definition of disability as a defiance of disablist norms. This definition of disability locates oppression not in the body or culture, but in the relationship between the

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