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

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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 body and power.

Davis’s and Garland-Thomas’ analyses reinforce the importance of integrating the category of ability/disability into feminist conceptions of intersectionality for its unique illustrations of power relations.

I then return to the empirical case study of cleft lip and palate. The practices of USA based medical cleft organizations have constructed a particular disease experience, what Maren

Klawiter (2004) would call a “disease regime.” Although other disease regimes exist, this disease regime dominants transnationally to the effect of silencing other models. Through the practices of authoritative discourse, emotional vocabulary, visual images, and regulatory actions, the organizations construct an exclusively materialist model of clefts. The visual and dialectic

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narrative of clefts constructs them as a personal flaw in need of surgical correction. Cleft organizations such as Operation Smile, Smile Train, and the World Craniofacial foundation employ surgery as a method of social control to regulate and normalize people with clefts. This problematic disease regime of clefts reinforces, rather than challenges, oppressive norms of race, class, gender, disability, and nationality.

How can this problematic disease regime be changed? As illustrated by disability activist critiques of the social model of disability, replacing the individual disease regime of clefts with an entirely social constructionist model like that of postmodern feminists would also be problematic. This model would not be able to make sense of the materialist aspects of clefts essential to life, such as eating and breathing. Thus, a social model of clefts would have dangerous implications for the health and wellbeing of children with clefts. Using the framework developed Davis (1995) and Garland Thomson (1997) to overcome the limitations of both the individual and social models of disability, I argue that a new disease regime of clefts should not locate the “problem” of clefts either in the material body nor social construction.

Rather, it should question the mutual relationship between the material body and systems of oppression that identify particular bodies as “abnormal.” This new model has implications not only for reconceptualizing cleft lip and palate, but also for reconceptualizing feminist understandings of materiality and social construction in relationship to intersectionality.

2. Restructuring Intersectionality with Disability

What is intersectionality and why is this concept so impactful in feminist scholarship?

Although most feminists agree on the importance of intersectionality as an approach for analyzing identity and oppression, the exact meaning of intersectionality and its applications are more varied (Nash 2008, Phoenix and Pattynama 2011). Leslie McCall called intersectionality

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“…the most important theoretical contribution that women’s studies, in conjunction with related fields, has made so far” (2005, 1771, cited in Nash 2008). Building upon this, Nina Lykke

(2010) argued the importance of intersectionality because of its role in bringing power struggles over political boundaries to the forefront.

Because the concept of intersectionality has been employed, critiqued, and redefined by a number of scholars in various political and historical contexts, providing a single specific definition is impractical. Kimberle Crenshaw (1989, 1995), a US based law professor, first coined the term intersectionality to describe how various categories of difference converge. She focused her analysis on intersectionality in black women’s lives and challenged the “single-axis analysis” used by Women’s Studies and Race Studies scholars which theoretically “erases” black women (1989). Her definition did not suggest that intersectionality can only be employed with black women as the subject, but rather that black women are a selective starting point for conceptualizing intersectionality.

Cherrie Moraga (1993) built upon Crenshaw’s definition by arguing that intersectionality can “make sense of” complex situations where multiple power structures are at play. Bringing this conception of intersectionality in conversation with more recent developments in feminist and anti-racist scholarship, Grace Hong (2006) described intersectionality as a particular

“reading practice” that “that insists on the importance of race, class, gender, and sexuality as interlocking and mutually constitutive” (x). She identified how this “reading practice” does not privilege a particular social position, but instead insists that scholars must “make sense of” the relationships between systems of oppression including heteropatriarchy, imperialism/colonialism, and capitalism.

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In an attempt to bring the plurality of these descriptions together, Lykke (2010) provided an “umbrella-like definition” of intersectionality. She suggested that intersectionality provides a

“theoretical and methodological tool to analyze how…power differentials and/or constraining normativities based on…constructed sociocutcultural categorizations…interact, and in so doing produce different kinds of societal inequalities and unjust social relations” (50). 2 Lykee stressed how intersectionality serves as a tool to understand power differentials and political resistance in relation to categories of difference such as gender, sex, sexuality, race, ethnicity, class, age, nationality, and ability/disability. The concept of intersectionality should not be understood as a

“mere addition” of these categories to an analysis, but rather as a “mutual and intertwined process of transformation” where categories of difference are constructed in relation to one another (51).

Thus, the most effective developments in theorization on intersectionality should not be an endless proliferation of categorization, but instead they should be an analysis of how various categories of difference shape one another. This framework is particularly evident in the history of feminist theorizing on intersectionality. Various feminisms have developed to critique previous approaches to intersectionality that fail to address central components that shapes power differentials. For instance, Marxist and black feminisms rose as a critique to first wave feminism which purported a simplistic understanding of power resulting from only considering the relationship between gender and oppression. Various critiques of these forms of feminist thought are continuing to emerge today, one of those being the near exclusion of ability/disability. The category of ability/disability is essential to include as an axis of analysis

2 Lykke revised her use of the word “interact” to “intra-act,” a term coined by Karen Barad (2003, 815). She made the distinction between interaction as “something that goes on between bounded entities” and intera-action as “an interplay between non-bounded phenomena, which interpenetrate and mutually transform each other” (51). 7

for its unique and intimate relationship to the body. Incorporating this category requires a structural reconsideration of the relationship between bodies and systems of oppression.

2.1 Development of Intersectionality in Feminist Theory

Feminists from a variety of schools of thought have been grappling with the concept of intersectionality before the term was coined by Crenshaw in 1989 (Lutz, Herra Vivar, and Supik

2011). Lykke (2010) calls this “implicit feminist theorizing,” referring to analyses that touch on intersectionality and do not name it as such. Debates on the relationships between gender and other categories of difference date back to the nineteenth century where Sojourner Truth described that black women’s invisibility created tensions between feminism and the anti-slave movement (Brah and Phoenix 2004, cited in Lykke 2010). Additionally, dialogue on the intersections of gender and class can be traced to the nineteenth and early twentieth century when socialist women challenged both bourgeois feminism and the worker’s movement for their narrow understanding of power differentials (Kollontai 1908 and 1918, cited in Lykee 2010).

These political movements set the groundwork for later “implicit feminist theorizing” on intersectionality in the 1970’s and 1980’s. Although a number of feminisms have implicitly addressed intersectionality from the nineteenth century onwards, I will focus here on selective forms of feminist thought, specifically black and Marxist feminism, which illustrate the progression of intersectional theorization. These feminisms are particularly significant for their ongoing interaction and mutual critique of one another in an effort to most effectively conceptualize and address oppression.

What spawned the acceleration of implicit theorizing on intersectionality? A primary motivation for bringing intersectionality to the forefront of these feminisms was the problematic

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use of the term “women” as a category of analysis. Chandra Mohanty (1988), a progressive feminist scholar, described how the

“the discursively consensual homogeneity of ‘women’ as a group is

mistaken for the historically specific material reality of groups of women. This

results in an assumption of women as an always-already constituted group, one

which has been labeled ‘powerless,’ ‘exploited,’ ‘sexually harassed,’ etc., by

feminist scientific, economic, legal and sociological discourses” (53).

She argued that hegemonic white, Western, middle class feminists incorrectly claimed a universal and homogonous group of transnational women united with the same mission. This notion of a global sisterhood was problematic for claiming to consider all women’s political interests, despite differences generated by categories such as race, ethnicity, class, and national origin. Similarly, Julia Kristeva (1981) denounced the notion that “women” are a coherent and naturally existent group. Instead, she argued for a feminism that allows for the “multiplicity of every person’s possible identifications” (35). Crenshaw (1999) proposed that intersectionality as a method for enabling this multiplicity.

That is exactly what US based black feminism did in the 1970’s, but without using term intersectionality (Lykke 2010). US black feminists critiqued “white, bourgeois feminism” for

“only [raising] the issue of white middle-class women’s experiences of oppression […and ignoring] the needs and the reality of the lives of all other women, including black women”

(Lutz, Herra Vivar, and Supik, 2-3). In the influential anthology This Bridge Called My Back,

Cherrie Moraga and loria Anzald a brought together selections from a number of women of color feminists to set the groundwork for this critique. In the anthology, The Combahee River

Collective’s The Black Feminist Statement created a “turning point” for this framework

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(Norman, 104-105). The group declared that “we are actively committed to struggling against racial, sexual, heterosexual, and class oppression [….] based on the fact that the major systems of oppression are interlocking” (Combahee River, 210). Unlike the metaphor of roads crossing implied by the term intersectionality, “interlocking” suggests that systems of oppressions are entirely dependent upon one another. Because some feminists find this image more effective, they still use the term today in place of intersectionality (Lykke 2008).

Despite black feminists’ implicit contributions to intersectionality, their framework was still critiqued. Flora Anthias and Nira Yuval-Davis (1983), British feminist researchers who published extensively on intersectionality, challenged early 1970’s US black feminism’s additive approach to intersectionality. They argued that the notion of the “triple oppression” of race, class, and gender overlooked complex entanglement between the categories. Furthermore, they critiqued black feminism’s perpetuation of a black/white division, stating that “the notion of

'black women' as delineating the boundaries of the alternative feminist movement to white feminism leaves non-British non-black women (like us-a Greek-Cypriot and an Israeli-Jew) unaccounted for politically” (63). This notion of intersectionality narrowly focused on a specific group of people and did not allow transferable theorization between groups.

Marxist feminists, who also emerged in the 1970’s, found the “triple oppression” description problematic, but for a different reason. Building upon contemporary Marxist theory, they emphasized classism as the primary system of oppression. Anthias and Yuval-Davis described how “contemporary marxist [sic] analysis has indeed recognized the importance of relating ethnic to class divisions and gender to class divisions but there has been little attempt to link ethnic and gender divisions to each other” (63). Even though they stressed the relationship between class and systemic oppression, they also recognized that class was not the “the sole

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category for understanding women’s subordination to men” (Tong 2009, 109). Because women’s lives were not significantly better under communism, they argued that capitalism and sexism could not be the only systems working together to oppress women. However, Marxist feminists continued to privilege capitalism as the primary system of oppression (Anthias and

Davis 1983, Lykke 2010). As a result, a Marxist lens contributed to “the invisibility of ethnic divisions” and failed to “link ethnic and gender divisions to each other…[and] had difficulty in analysing ethnic or gender divisions without reducing them to some form of class division” (63).

Some feminists attempted to rework the problematic areas of Marxist feminist and black feminist conceptions of intersectionality. For instance, Anthias and Yuval-Davis (1983) proposed a description of intersectionality that was based on the mutual relationships between ethnicity, gender, and class. They rejected the class reductionism of Marxism and the naturalized boundaries around collective identity of black feminism. Thus, their conception of intersectionality was “not a question therefore of one [category] being more ‘real’ than the others or a question of which is the most important.” They instead “suggest that each division exists within the context of the others and that any concrete analysis has to take this into account” (65).

Rather than privileging a single category of difference, Anthias and Yuval-Davis argued that feminists must instead shift their focus to how categories of difference mutually interact.

Audre Lorde’s (1984) The Masters Tools Will Never Dismantle the Master’s House resembles Anthias and Yuval-Davis’s framework that neither privileged a particular system of oppression nor conceived of intersectionality as a reductionist addition of difference. Her metaphor of the “master’s tools” and the “master’s house” implicitly illustrated her understanding of intersectionality. At the New York University Institute for the Humanities

Conference, Lorde presented on the only panel where a black woman’s input was sought. The

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relationships between race, gender, and sexuality were minimally considered at this conference.

Lorde argued that the omission of race was a “tool of racist patriarchy,” the “master’s tools,” which was unable to dismantle the structures that have disenfranchised so many, “the master’s house.” A “tolerance of differences” lacks the ability to “dismantle the master’s house” because it denies the power and strength that emerges from difference. Lorde illustrated that this

“tolerance of differences” permeates feminism, and thus feminists need to interdependently.

Due to the history of ongoing critiques and reworking the meaning of intersectionality, the concept has become an enormously beneficial method of analysis for feminists. In fact,

Leslie McCall (2005) argued that “one could even say that intersectionality is the most important theoretical contribution that women’s studies, in conjunction with related fields, has made so far”

(1771). One reason that intersectionality has become so important is because it offers feminists a tool to challenge the “tolerance of difference” in feminist theory that upholds the “master’s house.” Despite advances from Lorde (1984) and Anthias and Davis (1983) that enabled feminists to more effectively use the conception of intersectionality to deconstruct the “tolerance of difference,” additional steps are still needed to revise feminist understandings of intersectionality to eradicate feminists’ tolerance of difference (see Nash 2008, McCall 2005,

Davis 2008).

2.2 Integrating Disability

“As a disabled woman…I felt a deep sense of alienation from the nondisabled feminists present and anger that there seemed to be an assumption that they were ‘on the same side’ as me. This alienation and anger comes from the failure of feminism to integrate the concerns of disabled women into its theory, methodology, research and politics” (Morris 1993, 47).

Jenny Morris, a feminist writer and researcher, described her personal experience with feminism’s omission of disability. She noted how women with disabilities were excluded from

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not only this Women’s Studies conference, but from the discipline at large. She detailed how despite feminist advances in understanding that systems of oppression cannot be analyzed in isolation from one another, feminists continueto ignore an important category of difference that factors into these interwoven oppressions. Hegemonic feminists ignores disability, and thus cannot advocate for the full inclusion of all individuals.

Morris was not alone in her sense that feminism denies differences along the axis of ability/disability. Lennard Davis (1995), one of the leading Disability Studies scholars, argued that although academia enthusiastically discusses race, class, and gender in relation to one another, scholars greet the topic of disability with silence. He declared that disability is the

“missing term in the race, class, gender triad” (1). Similarly, Susan Wendell (1989) argued that

“feminist perspectives on disability are not yet widely discussed in feminist theory, nor have the insights offered by women writing about disability been integrated into feminist theorizing about the body” (106). The experiences and knowledge of people with disabilities has been excluded from feminist theory.

Robert McCruer (2006) summarized “as others have, that feminist and queer theories

(and cultural theories generally) are not yet accustomed to figuring ability/disability into the equation” (89). It is not just feminists have excluded ability/disability from the “equation” of intersectionality. Although disability activists and scholars are working through many of the same issues as feminists were 25 years before, they have excluded the lens of intersectionality all together (Garland-Thomson 2006). Although selective disability scholars and activists employ intersectionality as a reading practice, they are the exceptions. For instance, Chris Bell (2006) argued that Disability Studies “by and large focuses on the work of white individuals and is itself largely produced by a corps of white scholars and activists” (374). He makes his argument

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through citing well known disability scholarship, even Davis’s influential Enforcing Normalcy:

Disability, Deafness and the Body, that focus only on white disabled individuals. Bell illustrated that theorization on disability that excludes race only perpetuates ableism. Despite Bell’s contribution to disability scholars’ understandings of intersectionality, his article also unintentionally illustrates the novelty of intersectionality in the realm of disability theory.

Through only critiquing the exclusion of race, Bell simply “tolerates” gender and class (to borrow Lorde’s terminology).

Yet in other realms of disability activism, the concept of intersectionality is not even a consideration. The disability justice movement critiques the disability rights movement due to how hegemonic disability scholars base their analyses on single issue politics. Stacey Milbern and Leah Lakshmi Piepzna-Samarasinha (2010), disability justice activists, described the distinction between these two movements during an interview with Amy Goodman. They stated that disability rights is “a mainstream movement that’s very white, very straight, very middle class” and separates disability from intersectional issues, such as “how our bodies are policed or how our bodies experience trauma in the medical-industrial complex, or even…how our bodies

[…] are forced to fit the standard of what beauty is or what independence is.” In contrast, disability justice activists base their analyses on how disability intersects with other categories of difference. As a result, Milbern explained how “disability justice has been a just a space to…be whole […] where you don’t have to cut yourself up into little pieces and go here, go there.” Eli

Clare (2009), an English scholar whose work focuses on queer and disability theory, reiterated this critique through calling for disability activists to “abandon their single issue politics” and adopt an agenda that employs a multi-axis lens. He argues that ability/disability must be analyzed in relationship to other categories of difference and systems of oppression. Clare’s

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(2009) and Lakshmi Piepzna-Samarasinha’s and Milbern’s (2010) disability justice critiques of disability rights mimic early intersectional critiques of liberal feminism which incorrectly claimed to consider all women’s political interests, despite differences along lines such as race and class.

Yet the present day exclusion of disability from feminist conceptions of intersectionality, and the exclusion of intersectionality all together from Disability Studies are distinct downfalls.

Rosemarie Garland-Thomson (2006), a feminist and disability scholar, distinguished between

“disability studies’ [sic] ignorance of feminist theory” and “feminist theory’s omission of disability” because they are at different stages of development as disciplines (354). Although current Disability Studies struggles with similar issues as Women’s Studies did thirty years ago, most disability scholars do not draw from either feminist theory nor the developments from these theories. Susan Wendell (1989), also a feminist and disability scholar, cited a number of these common issues:

“Whether to stress sameness or difference in relation to the dominant group and in

relation to each other; whether to place great value on independence from the help

of other people, as the dominant culture does, or to question a value-system which

distrusts and de-values dependence on other people and vulnerability in general;

whether to take full integration into male dominated/able-bodied society as the

goal, seeking equal power with men/able-bodied people in that society, or

whether to preserve some degree of separate culture, in which the abilities,

knowledge and values of women/the disabled are specifically honoured and

developed” (105).

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Both gender and disability raise questions regarding oppression, hierarchies, social influences, and integration. Yet despite these similar struggles, feminist scholars also exclude disability from their agendas. While feminist theorists have the critical structure to grasp disability theory, they simple omit it. “Feminist issues that are intricately entangled with disability […] are discussed without any reference to disability,” such as reproductive rights (Garland-Thomson

1989, 257). Yet Garland-Thomson did not suggest that feminist theory can or should be entirely transferred to disability theory or vice versa. Rather, she argued that the most effective analyses of intersectionality consider the interwoven relationships between ability/disability, gender, race, ethnicity, sexuality, and class through bringing these two theoretical frameworks into dialogue with one another.

How does “figuring ability/disability into the equation” deepen feminist and disability scholars’ understanding of intersectionality (McCruer 2006, 89)? Primarily, “figuring ability/disability into the equation” enables scholars to continue to challenge systems of oppression. As Anthias and Yuval-Davis (1983) cautioned with the 1970’s American black feminism, intersectionality cannot take a reductionist, additive approach. Rather, intersectionality must centralize the entanglement between systems of oppression and consider how these systems fundamentally shape one another. Integrating disability does not simply add to theories of race, class, and gender, but rather it “shifts the conceptual framework to strengthen our understanding of how these multiple systems intertwine, redefine, and mutually constitute on another” ( arland-Thomson 2006, 259). This structural integration of disability will provide a tool to challenge how “normalcy continues its hegemony even in progressive areas […].

Disabled bodies are not permitted to participate in the erotics of power, in the power of the

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erotic, in economies of transgression” (Davis 1995, 158). Therefore, fully integrating the category of ability/disability “into feminist thought will be…revolutionary” (Morris 1993, 59).

But what is unique about disability that makes its incorporation into intersectionality so important and even “revolutionary?” Firstly, disability is a gendered issue (Wendell 1989).

Considering that 16% of women are disabled and more than half of people with disabilities are women, the categories of gender and disability are intimately tied together in numerous women’s lives (Fin and Asch 1989, cited in Wendell 1989). However, this does not mean that the intersections of disability and gender only affect disabled women, but instead this statistic illustrates how this intersection is at the forefront of so many lives. Secondly, Garland-Thomson

(2006) argued that “disability—like gender—is a concept that pervades all aspects of culture: its structuring institutions, social identities, practices, political positions, historical communities, and the shared human experience of embodiment” (259). Integrating disability into an intersectional framework will not just affect a few select people, but instead it will have a broader impact on structural understandings of oppression. Finally, incorporating disability will provide a richer understanding of intersectional issues related to the body, including “its materiality, its politics, its lived experience, and its relation to subjectivity and identity”

(Garland-Thomson 2006, 262). The bodies of both women and the disabled have been subjected to what Michel Foucault (1979) called “disciples;” their norm-challenging bodies have been regulated and normalized by systems of power. As a result, both women and people with disabilities are “cultural signifiers for the body” (cited in arland-Thomson 2006, 263).

3. The Forgotten Material Body

From a feminist and disability activist lens, the imbalanced disciplining of the body raises numerous questions in the face of oppression. To what extent does the disciplining of the body

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contribute to oppression? How can this disciplining be challenged? To what extent is an individual able to resist the external controls placed on their body? These questions all center on a greater question—to what extent is the ‘abnormality’ of particular bodies situated in the body itself? Because of its implications, this question has been at the forefront of theorization in the social studies for the past thirty years (Burr 2003).

To answer this question, theorists must distinguish between physical/biological and cultural/societal factors. Although scholars have taken a number of different stances towards this distinction, most scholars, particularly postmodern and postructuralist feminist, adopt an entirely social approach and argue that even the body itself is composed of social factors (Alaimo and

Hekman 2008). Because this social approach requires a critical stance towards unquestioned knowledge, it has been an incredibly beneficial tool against oppressive structures for

“challenging what it is permissible for different people to do, and for how they may treat others”

(Burr 2003, 5). Yet recently, more scholars are beginning to question how this approach actually perpetuates oppression through denying the lived experiences of particular groups. Disability scholars argue that the concept of social construction must be grounded in the material body

“because the disabled body compels one to give concrete form to the theory of social construction” (Seibers 2008, 331). Certain aspects of the experience of being disabled cannot be explained entirely by social factors.

The claim that the “disabled body compels one to give concrete form to the theory of social construction” is radical and seems to defy much of postmodern feminist theory. Thus, simply unpacking this argument and considering how the resulting theories can be integrated into feminist theory will have significant effects. This raises a number of challenging considerations.

How can the physicality of the body be incorporated into progressive theory without erasing the

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anti-racist and anti-sexist tools that have come from the social approach to understanding knowledge? Even more radical, how can theorization on the physical body be used to advance tools that challenge oppression?

3.1 Defining Social Construction and Materiality

Before exploring these questions, I must first diverge to distinguish between the concepts of the social and the physical. In postmodern theory, they have been described as separate forms of discourse distinguished by their approach to knowledge acquisition (Gergen 1989). These two discourses are entitled social construction and materiality. Vivien Burr (2003), a feminist psychology researcher who made significant contributions to social constructionist theory, argued that no single definition of these concepts exists due to the multitude and diversity of writings on the topics.

Thus, Burr and other theorists described social construction in terms of resemblance amongst a group of writings, rather than by a central defining characteristic. This resemblance focuses on “a critical stance towards taken for granted knowledge” which opposes a positivist view of knowledge that assumes the world can be objectively known through the senses (Burr

2003, 2). Hacking (1999), a Canadian philosopher of science, contextualized the Burr’s description by stating that social construction centers on a particular argument that “X is not inevitable. X was brought into existence or shaped by social events, forces, history, all which could have well been different” (7). Hackman details the two different kinds of X’s, or applications of social construction. While general claims address the social construction of the world and lived experiences, localized claims address the social construction of particular subjects. Because a social construction approach allows one to challenge assumed natural categorization of both general and specific X’s, it therefore provides a framework to challenge

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assumed natural categorization (Burr 2003). Social construction thus provides tool to challenge the framework of the “oppressors telling the oppressed to accept their lot in life because ‘that’s just the way it is’” (Tong 2009, 90).

One of the most significant localized applications of social constructionism has been deconstructing the naturalized category of woman. Simone de Beauvoir (1953) set the groundwork for this argument by asserting that "one is not born, but rather becomes, a woman”

(723). Judith Butler (1990, 1993) advanced this discovery years later by arguing that gender, sex, and sexuality are socially constructed through a performance and repetition of action. This theory significantly advanced feminist goals because “consequently, patriarchal attempts to justify woman’s subordination as the destined effect of nature’s prescriptions have had to adopt various guises” (Kirby 1991, 5). By not perceiving women as a homogonous group destined to a certain and limited fate, women’s possibilities in life were broadened.

The concept of materiality does not oppose the social constructionist stance that challenges oppressive assumptions of natural categorization. Instead, materiality occupies a distinct realm that discusses the “matter of solid matter” (Law and Mol 1995, 274). Daniel Miller

(2005), a material cultural theorist, clarified this definition through dividing it into two possible theories—“the first, a vulgar theory of mere artifacts; the second, a theory that claims to entirely transcend the dualism of subjects and objects” (3). The first theory describes “things” or physical objects. Miller dismissed this theory for being reductive, mundane, and unclear. For instance, simply identifying what constitutes a “thing” may be impossible. Are dreams, landscapes, kisses, sensations, images, or moments “things?” This theory defines materiality based on a narrow focus on the object itself. In contrast, the second theory provides a more complex notion of materiality that deconstructs the very division between a “thing” and the

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social context in which it exists. Vicki Kirby (1991) expanded upon Miller’s premise and argued that the interaction between the physical/biological and the social result in materiality. For instance, she explains that the term woman, although it does not accurately describe the individuals that comprise the category of “women,” cannot exist independent of actual people.

Thus, an effective theory of materiality is not about individual physical objects, but rather it is about how the physical and social mutually interact to construct a subject.

Despite this conception that the social and physical interact, feminists have conceived of these two forms as oppositional. In doing so, they have been able to adopt a single framework for theorization. Stacy Alaimo and Susan Heckman (2008), editors of Material Feminisms, argued that many feminists have adopted postmodern and poststructuralist theories that use an entirely social constructionist framework. As a result, “language has been granted too much power,” and this has incorrectly turned materiality into a social negotiation (Barad 2003, 801).

The notion that “language has been granted too much power” suggests that postmodern feminists have privileged social constructionism and disregarded materiality. In citing this claim, I do not seek to dismiss or minimize the significant advances that a radical social constructionist stance has allowed. Additionally, I do not intend to revert to a pre-social constructionist understanding of “nature” or “biology.”

Rather, I seek to explore how bringing materiality into the picture can continue to advance the feminist goal of increasing life chances for disenfranchised groups. Through excluding materiality, feminists have denied the lived experiences of so many individuals for whom they advocate. For some groups, materiality plays a central role in their lived experiences and social positions. For example, Moraga (1993) described how material oppression is at the forefront of women of color’s lives:

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“The materialism of this book lives in the flesh of these women’s lives: the exhaustion we feel in our bones at the end of the day, the fire we feel in our hearts when we are insulted, the knife we feel in our back when we are betrayed, the nausea we feel in our bellies when we are afraid, even the hunger we feel between our hips when we long to be touched” (xvii).

Moraga’s quote goes beyond socially constructed categories and critically examines the centrality of the body in identifying a subject.

3.2 The Disabled Body and Materialism

Moraga’s description of the centrality of the body in the authors’ lives reiterates how women, people of color, and disabled people are “cultural signifiers for the body” (Foucault

1979, cited in Garland-Thomson 2002, 10). Yet why does Moraga, unlike a number of other feminists, centralize the body in her theorization? Perhaps her inclusion of the physical body originates from her personal experiences that brought the body to the forefront of her own life.

After she gave birth to a premature baby and lived with him in the neonatal intensive care unit during his treatment, she gained a deeper understanding of how the physical body plays into daily life (Bost 2008). Illness, disease, and pain force individuals to interact with “MRI scans, microscopes, and blood tests [that] see the body beyond what we think of as identity […and examines] the variously formed tissues of particular bodies” (Bost 2008, 342). Considering how such conditions are typically categorized as disabilities, this quote suggests that the disabled body constantly interacts with medical intervention that reminds individuals of the materiality of the body.

But to what extent does disability actually relate to materiality? A number of constituents have struggled with this question, as demonstrated by the developments in simply defining disability. They have grappled with how to conceptualize disability in a way that neither denies the “variously formed tissues of particular bodies” nor underplays the role of social oppressions.

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From a disability activist perspective, developing a definition that successfully negotiates these two theoretical frameworks is essential for deconstructing disablism. Through the critical developments in defining disability, scholars and activists have generated a framework to conceptualize norms and difference in a way that challenges the material/social construction binary.

The debate in how to define disability has been driven by a distinction between impairment, disability, and handicap based on a spectrum of materiality and social construction

(Barnes 2006, Barnes and Mercer 2010, and Wendell 1996). Following Amelia Harris’s (1971) national survey of people with disabilities, Philip Wood (1981) developed an official transnational definition, the World Health Organization’s International Classification of

Impairments, Disabilities, and Handicaps (ICIDH). The definition describes disability as a process that begins with an individual, physical and intrinsic situation that leads to socialized barriers:

Impairment—“any loss or abnormality of psychological, physiological, or anatomical structure or function” Disability—“any restriction or lack (resulting from an impairment) of ability to perform an activity in the matter or range considered normal for a human being” Handicap—“a disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfillment of a role that is normal, depending on age, sex, social and cultural factors, for that individual. Handicap is therefore a function of the relationship between disabled persons and their environment” (cited in Barnes and Mercer 2010, 20-21)

This definition makes a clear distinction between the materiality of impairment and the social influences of “handicap.” Although this particular language has been rejected by disability activists for its negative value judgment, it does reflect a historical and continuing trend for understanding disability in terms of a dualism between materiality and social construction.

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Perhaps the most harmful definition of disability is the individual model, which exclusively identifies disability as a material issue. Michael Oliver (1983) named the individual model to describe how it “locates the ‘problem’ of disability within the individual and […] sees the causes of this problem as stemming from the functional limitations or psychological losses which are assumed to arise from disability” (32). Disability is perceived as a “tragedy” located in the individual and not the culture (Oliver 1996). Medicalization, a term coined by Zola (1983) to describe a “process whereby more and more of everyday life comes under medical dominion, influence, and supervision,” significantly contributes to this “tragedy” mentality of disability

(210). The medical focus of the individual model allows disability to be identified within the individual body as a “bodily ‘abnormality,’ disorder or deficiency” (Barnes and Mercer 2010,

18).

The individual model problematically marks physiology as the single reason for people with disabilities’ secondary status in society (Finkelstein 1993). Not only does this deny the role of institutions, practices, and ideologies in constructing and oppressing the disabled subject, but it also upholds the social construction/materiality binary through privileging the material. Thus, the model presents disability as authentic, fixed within an individual body, and unchanging

(Barnes and Mercer 2010). Because it locates disability in the individual and not social structures, person with a disability must “adapt himself or herself to society” rather than society adapting to the person with the disability (Oliver 1993, 65). As a result, the individual model does not provide a framework to deconstruct or even conceptualize the cause of oppression against the disabled.

The failure of the individual model gave rise in the 1970s and 1980s to the social model of disability. This model makes a local social constructionist claim that disability is situated in

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society and not the individual body (Oliver 1993). The dominant attitude purported by the individual model that disabled people require pity and medical alteration outraged disabled activists. A group of these disabled activists joined together to “not just challenge attitudes…

[but challenge] the very assumption of ‘normality’” (Hasler 1993, 280). A number of organizations by disabled people arose during this moment, one of which was the Union of the

Physically Impaired against Segregation (UPIS).

In The fundamental Principles of Disability, the UPIS (1975) implicitly defined the social model as a tool to “[challenge] the very assumption of normality.” The UPIS declared that

“society disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society” (Hasler 1993, 3). When Oliver (1983, 1990) named this description as the social model, he argued that the model locates the source of oppression not in the individual body, but

“squarely within society” as caused by structural exclusion and lack of support for people with disabilities (3). The social model became popular among people with disabilities because it creates “an immediate connection to their own experiences” (Oliver 1996, 31) and “argues for the full inclusion of disabled people in society” (Terzi 2004, 144). In other words, the social model was beneficial for the goals of disability activism.

Although the social model of disability provided a framework for challenging oppression against the disabled and seeking their full inclusion in society, the model is similarly problematic as the individual model for employing a material/social construction binary (Finkelstein 1993,

Morris 1991, Oliver 1996, Shakespeare 2006, Siebers 2010). A number of Disability Studies scholars have argued that the model exiles materiality through ignoring impairment (Hughes and

Patterson 1996, Shakespeare 2006). As a result, “debate about the body is silenced” despite how

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disabled people experience the centrality of the body in their daily lives (Hughes and Patterson

1996, 330). While the individual model privileges the knowledge of medical professionals, the social model privileges the knowledge of scholars. In neither case is the knowledge of people with disabilities centralized.

Now, we can return to the central question of this section--to what extent is disability material? Although disability activists claimed that disability was entirely socially constructed, a number of disability scholars and activists have since argued that materiality is actually at the forefront of disabled people’s lives (Siebers 2008, Finger 1983; Fine and Asch 1988). Liz Crow

(1992), who supported a renewed social model of disability, described how “as individuals, most of us simply cannot pretend with any conviction that our impairments are irrelevant because they influence every aspect of our lives” (7). Thus, an isolated social constructionist model of disability cannot dismantle all barriers and fully integrate people with disabilities into society without considering the material body. Tom Shakespeare (2006), a Disability Studies Scholar, raised the following scenarios to illustrate how materiality cannot be dismissed by isolated social constructionist theory: How could deconstructing social barriers allow a wheelchair user to traverse a mountain? The blind or visually impaired to see a sunset? A radical social constructionist could counter Shakespeare’s questions by challenging their very assumptions.

They would question, why does Shakespeare even place significance on climbing mountain or seeing a sunset? What systems of power have constructed these as important aspects of the human experience?

Although these counter questions suggest that social construction still plays a significant role in our conception of disability, it cannot explain the physical acts of climbing a mountain or the sensory component of seeing a sunset exclusively by social factors. The critiques of both the

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individual model, identifying disability exclusively in the body and thus not illustrating the role of social factors in oppressing disabled people, and social models of disability, disregarding the material experiences of people with disabilities, demonstrate that disability cannot be theorized in terms of a material/social construction binary (Hughes and Patterson 1997, Mitchell and

Snyder 1997).

In response to these critiques, Rosemarie Garland-Thomson (1997) and Lennard Davis

(1995) described disability in a way that transcends the material/social construction binary.

Rather than conceptualizing disability in terms of its origins in either the body or society,

Garland Thomson and Davis considered how the body and society mutually interact to construct the category of ability/disability. Garland-Thomson explained the interplay between the body and culture as follows:

“Disability is a representation, a cultural interpretation of physical transformation

or configuration, and a comparison of bodies that structures social relations and

institutions. Disability, then, is […] not so much a property of bodies as a product

of cultural rules about what bodies should be or do” (6).

She detailed how disability is neither exclusively a physical nor social state, but rather a bodily defiance of ableist norms. Similarly, Davis expanded upon this argument to identify two types of norms that people with disabilities defy. He stated that “disability presents itself to ‘normal’ people through two main modalities—function and appearance” (11). While the functional modality is the “inability to do something—walk, talk, hear, see, manipulate, and so on” (11), the appearance modality occurs as a “specular moment” through visualization of a disabled person

(12). Davis and Garland-Thomson shift the focus of disability theorization from the origin of disability to the relationship between disability and power.

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In an attempt to answer the questions posed at the start of this section, I have instead posed a different one. Scholars cannot continue to ask the question, to what extent is the

‘abnormality’ of particular bodies situated in the body itself versus society? While this question has provided a beneficial theoretical platform to reconceptualize oppression and exclusion of disabled people, it has since become a barrier to progress. Progressive scholars must instead ask how the material and social mutually interact with systems of oppression. Although theorization on disability especially illustrates the centrality of this question, the interaction between materiality and social construction can also be beneficial to understanding other categories of difference and their relationship to systems of oppression.

A few scholars have adopted this framework to reconceptualize race and gender. For instance, in essay entitled Cassie’s Hair, Susan Bordo (2008) recounted her struggle with employing a materiality/social construction binary in her own life. In deciding how to care for her adopted biracial daughter’s hair, Bordo had to question her reasoning for using certain hairstyles for Cassie. She had to rethink her “own former critique of hair straightening, being entirely ‘political’ in nature…[as] arrogantly oblivious to all the practical reasons why black people straighten their hair,” such as the difficulties in detangling it (406). In addressing something as seemingly mundane as hair styling, Bordo had to incorporate materiality into her earlier entirely social constructionist conception of race. As a result, she had to shift her focus from considering the origin of race to considering how both the material and social components of her daughter’s race interact with racist message about “normal” hair. Similarly, Alaimo and

Heckman (2008) argued that the social and material cannot be separated in feminist understandings of women. They state that “women have bodies; these bodies have pain as well as pleasure. They also have diseases that are subject to medical interventions that may or may

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not cure those bodies” (4). In citing the material components of women’s experience, Alaimo and Heckman sought to illustrate how systems of oppression control and regulate women’s lives and bodies. These examples suggest that contrary to feminist fears of materiality, structurally integrating materiality into intersectional analysis can benefit a number of disenfranchised groups through centralizing their knowledge and lived experiences.

4. Reconceptualizing Cleft Lip and Palate

One group that can benefit from an intersectional rethinking of the body is children born with cleft lip and/or palate, a congenital condition that can affect both function and appearance of the face. Major constituents of cleft lip and palate define it according to a particular narrative involving deprivation, ugliness, suffering, and illness. A neutral definition of cleft lip and palate does not exist in the public domain. Directors of Western based cleft charities, the media, and medical professionals identify the defining features and experiences of clefts, not individuals with clefts and their families. Their common descriptions of clefts include “life threatening and grotesque deformities” (Peterson 1997, para. 10), “debilitating deformities,” “curses” (The

Problem, para. 2), “abnormalities” (Who We Are, para. 1), “freaks” (Mullaney, cited in Porter

Brown 2009, 59). These emotionally charged and powerful words portray clefts in a highly negative manner as a defect that must be changed.

Medical professionals provide the support for these harsh descriptors. They define clefts a one of the most common birth defects transnationally resulting from abnormal development early in pregnancy. Clefts occur when the lip and/or palate of the fetus do not fuse during facial formation. A baby can have a cleft of the lip, palate, or both, and the cleft can be one sided

(unilateral) or two sided (bilateral). They can range from an inconspicuous notch in the lip, called a micro-cleft, to a complete bilateral cleft lip and palate that leaves a prominent opening in

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the face (Thaller and Jong Lee 1995, About Cleft Lip and Palate 2006). Clefts are typically an isolated birth defect, although in some cases they can also be part of a recognized or unrecognized syndrome (Saal 2002, Wulfsberg 2002). Researchers suspect that a combination of environmental and genetic factors causes clefts. For instance, the occurrence of clefts has been reported higher when the fetus is exposed to drugs and cigarette smoke or when the mother or father also has a cleft (Mayo Clinic 2010). Yet no matter the cause, children born with clefts will experience a number of functional challenges depending on the type and degree of clefting.

Breathing, speech, hearing, and teeth may be affected. In order to address these functional and aesthetic “abnormalities,” children with clefts whose families have the socioeconomic resources typically undergo surgery and a number of medical treatments beginning in infancy (Facts about

Cleft Lip and Palate 2011).

Due to the confined conversations on clefts to the medical and charity communities, they have been defined in terms of a bodily defect that can and should be corrected through medical intervention. Although there has been some theorization by economists, ethicists, and psychologists, alternative conceptions of clefts and the role of clefts in a greater structural context are almost non-existent (see Berger and Dalton 2009, Berk and Marazita 2002, and

Straus 2002). As a result, clefts have been portrayed and addressed similarly to the individual/medical model of disability that locates the “problem” and “tragedy” of clefts entirely in an individual’s material body (Oliver 1983, 1996). As illustrated by critiques from supporters of the social model of disability, the individual model does not allow any questioning of the narratives, treatment, or portrayal of conditions.

Although I discuss this individual model of cleft as the dominant one, I do not mean to imply that this is the universal and most problematic model. Luis Bermudez (2000), a medical

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volunteer with Operation Smile, detailed how “each country [that receives services from

Operation Smile] exhibits different strengths, weaknesses, and specific needs” (45). For instance, Operation Smile identified a different cause of the “problem” of non-operated clefts in

Columbia versus most Latin American countries. While many children in Columbia are denied surgery because it is not profitable for the plastic surgeons, many children in other Latin

American countries do not receive surgery simply do to a lack of resources in the community at large. Additionally, local attitudes regarding the experience of clefts and thus the actions to regulate clefts differ significantly among communities around the world. While communities in some countries in the global south employ “ethno-eugenic survivalist strategies” as a tool for deviance management, most Western communities employ surgical correction as a tool for deviance management.

However, the American based charity model of clefts dominates to the extent that it even changes local conceptions of clefts around the world. Ethan Watters (2010), author of Crazy

Like Us: The Globalization of the American Psyche, detailed the same kind of Americanization yet with mental health. He illustrated how the American conception of mental illnesses has not only changed the definitions and treatments of mental health transnationally, but even changed the mental illnesses that individuals experience. For instance, the American symptoms of anorexia have spread to Hong Kong where patients just a few decades ago “did not display the classic fear of fatness common among Western anorexics, nor did they misperceive the frail state of the body by believing they were overweight” (13). Americanization has decreased the diversity in explanations, treatment, and even symptoms of mental illnesses around the world.

Similarly, the Western charity narratives and regulatory actions of clefts as an individual, material failing have come to dominate transnationally.

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4.1 Cleft Lip and Palate as a Disability

Why are clefts a fitting case study for integrating disability with intersectionality? How do clefts relate to the category of disability, and what are the implications of placing clefts in this discussion of disability? As illustrated in the previous section on defining disability, the category of disabled is unstable, ambiguous, and controversial (Davis 1995). Thus, even discussing a condition that does not have a clear and established relationship to disability is challenging and potentially problematic, especially with regards to misrepresenting a group and policing the category of disability. In discussing clefts in this relation to disability, I do not intend to speak on behalf of all people with clefts nor reinforce boundaries around the category of disability. Rather, I hope to explore how placing clefts in a larger discourse on disability can have political and theoretical benefits.

Categorizing clefts as a disability can potentially dismiss the identity and experience of people with clefts. While some scholars and medical professionals identify clefts unquestionably as a disability (ex. Harper and Peterson 2001, Harper 1995, Fox 2009, Baker and Smith 1939), a number of people with clefts may not consider themselves disabled. For instance, a survey of young adults with post-operation clefts and their parents found that young adults with complete unilateral cleft lip and palate did not “feel significantly or emotionally handicapped [sic]” by their clefts (Noar 1991, 279). Even though the patients experienced teasing and had lower confidence in finding an intimate partner, they stated that their post-operation clefts did not significantly impact their daily living. Similarly, a friend of mine with a repaired bilateral cleft lip and palate, Jamie Bell (2011), described how the category of disabled does not reflect her personal experience. She explained that “in 6th grade […] I found some Parents of Children with

Cleft Lip and Palate reference books in the basement and throughout the entire book it referred

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to the children as HANDICAPPED. Really? So I asked my mom what exactly handicapped meant, like do I get a parking sticker?” As a sixth grader, Bell understood the strict boundaries around disability that denies the actual ambiguity and instability of the category. Both Bell and

Noar refer to the outdated term “handicapped” to distance people with clefts from disability and suggest a negative association with the category.

Yet Bell and the patients in Noar’s study are not alone in resisting the category of disabled. Wendell (1996) suggested a couple of possibilities for why so many people with

“disabilities,” she included, resist the label. First, stereotypes depict people with disabilities as

“totally disabled, unable to do anything for themselves or others, and therefore in need of charity; as long as they can do anything, people who have this stereotype in mind refuse to think of themselves as disabled out of pride and to avoid charity” (27). In other words, common perceptions depict disabled people as entirely helpless and dependent. While the functional effects of clefts vary significantly, even compared to this stereotype people with clefts seem distant from the description of “totally disabled [and] unable to do anything for themselves.”

Second, Wendell proposed that resisting the label of disability is a way of “minimizing one’s own difficulties in order not to feel frustration, grief, or shame” (27). For an individual with a

“disability,” resisting the imposed category of disabled can be a personal tool for psychological well being. Similarly, Erving Goffman (1963) explained that disability, or what he called

“abominations of the body—the various physical deformities,” cause “disabled” people to be stigmatized and thus cast aside by the “normals,” or individuals without stigma (4). Goffman argued that due to this stigmatization, “the stigmatized individual” will not only resist their categorization, but he/she/ze will attempt to overcome or eliminate their disability. He identified clefts and other facial atypicalities as an example, citing Baker and Smith (1939) who detail that

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surgery has become a method to remove the stigma associated with “the scar, harelip or misshapen nose [that] has been looked on as a handicap” (55). Discussing clefts in relationship to the category of disability aligns them with this stigmatizing discourse.

Considering these risky implications, how can classifying clefts as a disability be beneficial? Davis (1995) argued that the term disabled maintains power that can be used both for and against people marked by their norm-challenging function or appearance. Using deafness as a case study, Davis demonstrated that disability can be used for progressive political purposes when a condition has an ambiguous relationship to the stereotypical definition of disability, even when individuals with a condition reject the label. Many people who are deaf or hard of hearing do not identify as disabled, citing that their impairment disappears when they are in a group. As such, they instead identify as part of a linguistic and cultural subgroup, “Deaf” (Davis 1995,

Carver 1996). However, while some “Deaf” people may not consider themselves disabled, the ableist majorities does (Wendell 1996, Davis 1995). Davis still classifies “Deaf” people as disabled according to his definition of disability due to how deafness defies disablist norms of both function (speech and hearing) and appearance (visually identifiable hearing aids and signing).

Similarly to deafness, clefts also defy disablist perceptions and norms of function and appearance even though it does not follow the stereotype of disability. Both deafness and clefts challenge the functional norms of speech and hearing. Due to the buildup of fluid in the middle ear, children with cleft palate have an increased chance of hearing loss even after surgical intervention (Gould 1990). Additionally, many children with both un-operated and post- operated clefts will have speech challenges. For people with un-operated cleft palate, “there is no separation between the nasal cavity and the mouth. This means that a) the child cannot build

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up air pressure in the mouth because air escapes out of the nose, and b) there is less tissue on the roof of the mouth for the tongue to touch” (Speech Development 2001, 1). The physical structure of cleft palates does not provide the mechanisms necessary for typical speech. Furthermore, over half of children with post-operated cleft palate will require speech therapy (Speech Development

2001). Why do speech and hearing difficulties constitute disabilities though?

Davis (1995) argued that the very belief that people should communicate through speech and hearing is a constructed, disablist norm. He described that “if we look carefully, we can see that the aural/oral method of communicating, itself seen as totally natural, like all signifying practices, is not natural but based on sets of assumptions about the body, about reality, and of course about power” (16). Through adopting a social constructionist framework to analyze the norm of speech and hearing, Davis demonstrated that this norm identifies people who cannot speak or hear typically as disabled. For example, Brian Mullaney, founder of Operation Smile, describes children with clefts as disabled through highlighting their abnormal speech and hearing. In a biographical article on Mullaney, Nell Porter Brown (2009) cited Mullany’s statement that children with clefts “sound retarded and they are treated like freaks, like the

Elephant Man” (59). While highlighting his own disablism through his use of language,

Mullaney also illustrated how children with clefts defy norms of speech and are therefore punished by being labeled as “Other.”

Clefts also constitute a defiance of disablist norms of appearance. Both non-operated clefts and post-operated clefts violate expectations of the “normal” mouth, nose, and lip. While surgery is able to significantly reduce these visible “abnormalities,” signs of clefts often remain in the form of scars, dental anomalies, and facial asymmetry (Millar et. al. 2011). Furthermore, a number of researchers have found that the noticeability and not extent of a disfigurement affects

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social interactions and expectations (Blakeney et al., 1998; Meyers-Paal et al., 2000, cited in

Maddern et. al 2006). Thus, even when considering microclefts, a tiny notch in the lip, the prominence of a facial atypicality makes clefts in general a significant disruption to appearance norms. This disruption occurs through what Davis (1995) entitles a “specular moment” (129).

He described how “disability…is a disruption in the visual, auditory, or perceptual field as it relates to the power of the gaze” (129). In analyzing a number of images in art, film, photography, and other media, Davis illustrated how culture constructs disability through the

“normal,” able bodied person visualizing the “Other,” the disabled person. Clefts, like disabilities in general, are perceived as what Davis would entitle a “fragmented body” that defies the notion of the self as a flawless being. Even though some people with clefts do not consider themselves disabled, the ableist majority does due to how clefts defy norms of function and appearance. Thus, categorizing clefts as a disability can provide a framework to understand the power invested in these otherizing norms.

4.2 The Disease Regime of Cleft Lip and Palate

Clefts cannot only be analyzed along the axis of disability. Race, class, gender, and nationally also play significant roles in constructing clefts as an “abnormality.” This is especially apparent when analyzing the practices of Western charities that provide surgery for children with clefts transnationally. Organizations such as Operation Smile, Smile Train, and the

World Craniofacial Foundation have capitalized upon and violently policed norms that identify noncompliant bodies as Other. The practices of these organizations constitute a powerful institution of the cleft disease experience and narrative, or the “disease regime” of clefts.

Maren Klawiter (2004), sociology of medicine researcher and professor, first coined the term “disease regime” to describe a regime of practices that shapes the experience and narrative

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of disease and illness. She defined disease regimes as “the institutionalized practices, authoritative discourses, social relations, collective identities, emotional vocabularies, visual images, public policies and regulatory actions through which diseases are socially constituted and experienced” (851). In other words, she argued that disease experiences are influenced by cultural, historical, and political factors. Through conducting a case study of “Clara Larson,” a

56-year-old woman living in San Francisco, Klawiter provided an illustration of a disease regime. Larson offered an insightful case study because of her geographic location and the timing of her two episodes of breast cancer in 1979 and 1997. Activism, media coverage and corporate support drastically changed the disease regime of breast cancer in the 1990s. As a result, Larson had two distinct disease experiences. The first was marked by “stigmatisation, isolation and invisibility of women with breast cancer” and hierarchical power relationships between doctors and patients (Klawiter 2004, 847). The second disease regime reclaimed by feminists had been politicized along lines of gender and sexuality to create a “public culture overflowing with symbolic gestures of support, solidarity, respect and recognition” (Klawiter

2004, 847). While this new disease regime provided an empowering alternative based on more collaborative relationships, it was still highly problematic for its narrow and glamorzied narrative

(Ehrenriech 2001). Klawiter’s study illustrates how the concept of disease regime enables scholars and activists to identify the practices and institutions that contribute to the disease experience. Thus, the concept of disease regime provides a tool to question and analyze potentially problematic disease experiences and narratives.

Recognizing the disease regime of cleft lip and palate can offer a strategy to change the common perceptions of clefts as “debilitating” and “grotesque deformities” that must be eliminated. Although the disease regimes of clefts vary historically and geographically, likely

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the most dominant and recognizable disease regime of clefts is situated in Western based medical charities. This disease regime began in the 1980s and early 1990s when organizations such as

Operation Smile, Smile Train, and the World Craniofacial Foundation (WCF) were founded.

While intending to generously provide surgeries to children with clefts, they have imposed a particular Western understanding of the experience and necessary treatment for cleft on communities transnationally. They use the practices described by Klawiter (2004) of

“authoritative discourses, social relations, collective identities, emotional vocabularies, visual images, public policies and regulatory actions” to create and implement this hegemonic disease regime (851). This regime is based on a singular construction of people with clefts as child of color in the global south living in poverty and ostracized from their communities.

As described by the mission statements of these three organizations, they share two main practices. First and foremost, they provide free reconstructive surgery to children with facial atypicalities around the world who otherwise could not afford it. For instance, Smile Train’s mission describes how the organization “provides free cleft surgery to hundreds of thousands of poor children in developing countries” (About Us a, para. 2). Similarly, Operation Smile claims to “[provide] much needed surgical services […] for children and young adults born with cleft lips, cleft palates and other facial deformities” (About Us b, para. 4). Even in the mission statements of these organizations, their use of language suggests a particular idea of the disease experience through words such as “poor,” “developing country,” and “facial deformities.”

Second, the organizations seek to train doctors in countries around the world to perform cleft surgeries, although their methods differ slightly. The WCF established a number of fellowships to educate doctors on surgical procedures for clefts, including the Plastic Surgery Educational

Foundation’s International Scholars Fellowship that sponsors doctors from abroad to come to the

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US to study craniofacial plastic surgery (What We Do). In contrast to the WCF’s thorough and small scale method, Smile Train developed a large scale, easily accessible program to train doctors even in the most remote areas of the world. Smile Train provides the largest cleft related medical library in the world online and the most extensive offering of grant programs for doctors providing services to kids with clefts (Ma 2010). Not only are these US based organizations providing resources for kids with clefts and the doctors that treat them, but they are actually constructing the global protocol of treating clefts. For instance, Operation Smile cites that as a result of their growing presence and training programs, the majority of their missions are now being initiated from the host countries instead of the US. This suggests that although these organizations spread the colonizing disease regime, the partner communities are actually engaged in the adoption of the disease regime.

Still, these organizations are the dominant forces in constructing and spreading the disease regime, as illustrated by their forceful practices. Through the practices of authoritative discourse, emotional vocabulary, visual images, and regulatory actions, the organizations construct an exclusively materialist model of clefts. All of these practices enforce problematic norms of race, class, gender, and disability.

This is especially evident in the authoritative discourse that describes cleft lip and palate as an “abnormality.” The founders, website authors, media producers, and fundraisers of the organizations employ a particular narrative to claim that children with clefts are abnormal with regard to functions of daily living, contributions to society, and social interactions. Dr. Kenneth

Salyer, founder of the WCF, unintentionally summarized this narrative of abnormality:

“I believe the children of the world deserve to lead normal lives, and for one child in 500

births, a normal life can be an elusive, often unachievable dream without craniofacial

39

surgery. A normal face and skull are essential to a normal life. Consider a child born with

a congenital abnormality causing a twisted nose, an absent side jaw or a missing eye orbit

- a child with a disturbing facial distortion. Imagine the reaction this child receives when

he or she walks into a grocery store, much less attempts to succeed in school or perhaps,

make a friend. These precious souls live a life of constant rejection and ridicule” (para.

1).

In attempting to illustrate the need for the WCF, Dr. Salyer instead contributed to the narrative that identifies clefts as a problem in need of a solution. Using emotional vocabulary, Dr. Salyer vividly contrasted a child with a facial atypicality, “a child with a disturbing facial distortion,” with children with typical facial structures. By describing the daily activities of a “normal” child, Dr. Salyer opposed how the “abnormal” child with a facial atypicality is banned from these realms through “rejection and ridicule.” Through this quote, Dr. Salyer placed clefts within a larger dualistic dialogue of normal/abnormal.

Smile Train employs a similar framework to describe the abnormality of clefts. For instance, Smile Train (2011) produced a video advertisement that polarized people with clefts and the ideal woman. In the video, Aishwarya Rai Bachchan undergoes a transformation to seemingly grow a cleft lip and palate. She struts down a golden walkway framed by glowing silver walls while a caption plays underneath, “Indian actress and former Miss World. Appeared in over 40 movies” (0:04). As she reaches the end of the walkway, she announces that “my life has truly been blessed” (0:06). The visuals of this scene contextualize her statement. Bachchan has light skinned and smooth brown hair and is able to gracefully walk in high heels. These components establish Bachchan as a context dependent idealized woman based on norms of race, gender, ability, and class. The norms are then shattered by Bachchan undergoing a temporary

40

cleft transformation, stating that “sometimes I wonder what would have happened to me if I was born with a cleft lip. If my parents had abandoned me. If I never had any friends. If I could never smile. No one should ever live like that” (0:08). While speaking this narrative, the frame snaps to a close up on her mouth to highlight her growing cleft and emphasize her nearly incomprehensible speech. Bachchan describes the aspects of a “normal” child’s life that she claims a child with a cleft could never achieve. Both the narratives and visuals of the clip establish clefts as an “abnormality.” Placing the characterization of Bachchan as an idealized woman next to the image of Bachchan with a cleft constructs an exaggerated divide between

“normal” and “abnormal.”

Smile Train, Operation Smile, and the WCF exclusively use visual images in other media, particularly for fundraising efforts. They employ three types of images to intentionally enforce the “abnormality” of children with clefts in order to highlight the need for these organizations. This is especially evident in the images that depict children with clefts being saved by Westerners. In a fundraising campaign for Grace, a three-year-old girl from Zambia with severe hypertelorism and a facial cleft, the WCF’s website displays a photo of her held by a

Western surgeon (figure 1). As a white, upper class, able bodied male, the surgeon upholds norms of function, status, and appearance. Grace provides a stark contrast to these norms as a black, visibly disabled little girl living in poverty. She serves as a token for what Dr. Salyer would describe as the one in 500 children with a “disturbing facial distortion” for whom “a normal life can be an elusive, often unachievable dream.” Operation Smile presents a similar image on the front page of their website featuring Arifase, a thirteen-year-old girl from Ethiopia with a unilateral cleft lip (figure 2). Roma Downy, an Irish actress and singer, stands opposite of

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Arifase with a message stating that “you can make a difference in the life of a child.” This statement constructs Downy as the powerful one able to “help” children like Arifase.

The spatial placement, visual disparity, and discourse in this image serve to differentiate Downy and Arifase on the basis of race, age, ability/disability, and class.

Operation Smile situates a second type of normalcy enforcing image within this same advertisment, the before and after surgery dichotomy. Arifase’s current picture overlaps a younger picture of her before surgery. The before image depicts Arifase wrapped in a concealing shawl with an expressionless face. In contrast, the after image shows her unconcealed, looking at the camera, and smiling. Smile Train employs a similar structure with one of their prominent internet advertisements that shows four-year-old Angelica before and after surgery (figure 3). The text above her two images states that “just one gift can save a child forever.” The WCF utilizes this same framework for their internet advertising. In the Before and After Gallery, the WCF features a number of children with clefts and other facial atypicalities before and after surgery (figure 4). Bill Magee, co-founder of Operation Smile, perfectly puts words to the message that these advertisements send. He claims that “all [that kids with clefts] are asking for is the elimination of some misery that none of us would like—such as watching our child tortured for life” (cited in Peterson 1997, para. 7). These images and associated discourse police the boundaries of normalcy.

Yet even more prominent in policing norms are the organizations’ direct regulatory actions that seek to literally eliminate clefts. Surgical expert on craniofacial atypicalities, Jeffry

Marsh (2006), cites the dominant perception that “we should use surgery to normalize individuals” (113). Amnon Jacob Suissa (2011) expands upon Mark’s statement to explain that the perception that surgery is needed to normalize individuals is actually embedded in a powerful

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regulatory action, stating that “plastic surgery functions as a modality of social control and management, not only of the physical body as such, but at the social level as well” (619).

Operation Smile, Smile Train, and the WCF capitalize upon this power to offer surgery as the only option for children with clefts to achieve “normal” lives. For instance, Operation Smile states that “the goal of every medical mission is to fulfill a child’s greatest wish: the chance to be normal” (Our Work, para. 1). Through narrating the experience of a five-year-old patient from

Brazil, Operation Smile provides a story to this mission of achieving normalcy. Abandoned by her parents and teased by her classmates, “the first five years of Maria’s life were filled with hardship and pain” (caption A). Yet after receiving surgery from Operation Smile, “she can attend school, make friends, and live a normal life” (caption B). Maria’s story is just one of many descriptions of how Western surgery can “save” a child with a cleft from an “abnormal” life. The WCF also presents the story of Martine, a twelve-year-old girl from Cameroun born with a unilateral cleft lip. The story identifies surgery as the solution for how Martine “would like to look like other girls and not have others make fun of her appearance” (para. 1). These two stories assert the urgency of appearance normalizing surgery without recognizing the powerful regulation of norms by plastic surgery.

The practices, especially the regulatory actions, of the Western charity based disease regime of clefts seem echo the earlier discussions of this essay in a number of ways. First, they consider clefts to be a “problem” located entirely within the individual. The WCF’s fundraising image of Grace, the three-year-old girl from Zambia with severe hypertelorism and a facial cleft, provides a pertinent example. It depicts race as “abnormal” through having her sit on the lap of a white, professional, able bodied, male doctor. This visual plays off of race’s “abnormality” to raise money for the organization, emphasizing that for race to have a “normal” life she must

43

change. Second, the practices of the disease regime of clefts seek to correct the “abnormality” of clefts through only physiological alterations. As illustrated by the regulatory actions of the disease regime, the organizations assume that providing appearance and function normalizing surgery will eliminate the challenges faced by people with clefts. For example, Jane Kaczmark, a volunteer with Smile Train, describes how the surgeries give “kids with clefts a life. They will be able to go to school, they will be able to get a job, they will be able to have a friend” (3:18).

Rather than questioning the belief that clefts are a “problem” in need of correction, Jane

Kaczmark and the organizations at large claim that the problem can be eradicated through altering the material body. These two descriptions of the disease regime of clefts mimic the individual model of disability, which “locates the ‘problem’ of disability within the individual and […] sees the causes of this problem as stemming from the functional limitations or psychological losses which are assumed to arise from disability” (Oliver 1983, 32). Under the

Western charity disease regime of clefts, like the individual model of disability, clefts are portrayed as an individual material problem with only a material solution.

5. Conclusion: Reconceptualizing the Cleft Disease Regime

I have called for a radical intervention in hegemonic feminist theories of intersectionality and the Western charity disease regime of cleft lip and palate. Feminists cannot simply “add and stir” disability into their theories of intersectionality alongside race, class, and gender. Rather, they must structurally readdress a number of theories that have excluded the implications of disability. As a preliminary contribution, I have readdressed the materiality/social construction binary that has allowed postmodern feminists to privilege social constructionist analysis. The category of ability/disability illustrates how denying the materiality of the body problematically denies the lived

44

experiences and knowledge of people with disabilities. While social constructionism provides the tools to argue for the full inclusion of marginalized groups into society, it disregards the pain, exhaustion, and medical intervention experienced by the disabled body. As a result, feminists continue to use what Audre Lorde (1984) identified as the

“master’s tools” of denying difference to uphold the “master’s house” of oppression.

Contemporary feminists, who already adamantly claim the importance of honoring differences, must question how they can more effectively conceptualize difference to truly dismantle the “master’s house.”

The Western charity disease regime of cleft lip and palate, untouched by progressive academics, provides an example of the urgency for an intersectional reading practice that centralizes disability. Although many individuals may not considered clefts to be a disability, employing the discourse of disability provides a framework to understand the relationship between clefts and disablist norms. A fully intersectional analysis of the cleft disease regime illustrates the harmfulness of employing the binary of social construction/materiality. Unlike postmodern feminists and disability activists of the 1970s and 1980s who argue for exclusively social constructionist interpretations, this disease regime employs an exclusively materialist model that identifies the individual physical body as the source of the exclusion of people with clefts. As a result of their exclusively materialist model, the proponents of this disease regime overlook their own role in powerfully constructing clefts as a defiance of norms on the basis of race, class, gender, nationality and disability. Yet perhaps just as problematic would be a disease regime that radically prioritizes social constructionist theory. Would such a disease regime disregard the functional needs of people with clefts and thus deny the nutritional

45

and respiratory care needed by some, although not all, individuals with clefts? An exclusively social model of clefts, which would rightfully criticize the medical system and medical intervention, may also dangerously overlook how modern Western medicine may sometimes be the only way to postpone death.

This raises a central unanswered question. What is the ideal disease regime of clefts? While the Western charity disease regime dominates, other models do currently exist or have existed in local communities, albeit often displaced by the imperialist nature of the dominant charity model. For instance, anthropologist Nancy Scheper-Hughes

(1990) implicitly described a disease regime of some communities, such as among the

Baribas in Northwest Nigeria and people outside of Recife in Northeast Brazil, where infants with facial anomalies are often sentenced to infanticide. Due to a combination of deviance management and the competition for scarce resources, families employ “‘ethno- eugenic’ survivalist strategies.” Babies are examined upon birth for family resemblance and aesthetic standards before parents decide to raise the child. If a baby fails this examination, they will be sentenced to infanticide or cast aside into the category of

“untouchable” (301). Although Shcheper-Hughes cautioned against what she described as western medical “child saving,” she also illustrated how this “child saving” may be a coloniallist improvement upon infanticide. While Scheper-Hughes does offer this one example of a disease regime other than the hegemonic Western charity model, the infanticide model is not intended to represent all the variety and complexity of disease regimes of clefts transnationally.

Eric Parens (2006), editor of Surgically Shaping Children, offered another model that attempts to overcome the weakness of both the infanticide and Western charity

46

disease regimes of clefts. Parens argued that the hegemonic model of clefts as an individual problem automatically need of surgical correction or ostricisization must be replaced with a model that allows children with clefts to choose when and if to have surgery. In one of the articles of the anthology, Marsh (2006) explained that surgery for conditions such as clefts should be postponed until a child can provide informed assent unless a surgeon determines the absolute necessity for the surgery based on the following criteria: “(1) to postpone death; (2) to prevent irrevocable consequences; (3) to alleviate pain and suffering; and (4) to improve the quality of life” (117). Although this model beneficially questions the regulatory action of surgery, it does not question structures that consider clefts to be an “abnormality” in the first place. This model simply displaces the responsibility for deconstructing norms of appearance and function from systems of oppression to individual children. Additionally, it assumes that children with clefts are independent agents free to make a choice without cultural and familial pressure.

Rather than answering the question of the ideal disease regime of clefts, this discussion instead suggests the complexity of the topic. Neither an exclusively social constructionist nor materialist model is sufficient to address all of the aspects that contribute to the exclusion faced by many children and adults with facial atypicalities.

Furthermore, one approach that may work for a particular community at a specific point in time to increase the inclusion for individuals with clefts may be ineffective for another cohort. Extrapolating this claim, postmodern feminist scholars must also critically question their routine application of social constructionist theory. While I do not suggest that an exclusively social constructionist model can never be beneficial, I do argue that we must critically consider both social constructionism and materiality in a non-dualistic

47

manner. Postmodern feminists and constituents of the variety of cleft disease regimes must ask themselves, to what extent and in what context is a social constructionist or materialist model beneficial?

This paper makes a preliminary contribution to that question. Altering the

Western charity disease regime of cleft lip and palate depends upon challenging the norms of race, class, gender, nationality, and ability/disability that marginalize children and adults with clefts uniquely transnationally. Cassandra Aspinall (2006), an American woman born with a bilateral cleft lip and gum, describes this call to action, stating that “ I am not different to myself, but I am in the eyes of others” (13). Regardless of the origin of clefts in materiality or culture, we must question the practices and discourse that force individuals with clefts to conform to norms that marginalize so many.

Bibliography

"About Cleft Lip and Palate." Cleft Palate Foundation. 2006. Web. 17 Jan. 2012.

“About Us.” Smile Train. Web.

“About Us.” Operation Smile. Web.

Alaimo, Stacy, and Susan J. Hekman. Material Feminisms. Bloomington, IN: Indiana UP, 2008. Print.

Anthias, Floya, and Nira Yuval-Davis. "Contextualizing Feminism--Gender, Ethnic and Class Division." Feminist Review 15 (1983): 62-75.

"Aishwarya Rai Bachchan - Smile Train Children's Charity Ad." YouTube. Smile Train, 16 July 2011.

Baker, William Y., and Lauren H. Smith. "Facial Disfigurement and Personality." Journal of the American Medical Association 112.4 (1939): 301-04.

Barad, Karen. "Posthumanist Performativity: Toward an Understanding of How Matter Comes to Matter." Gender and Science 28.3 (2003): 801-31. Print.

Barnes, Colin and Geof Mercer. Exploring Disability: A Sociological Introduction. Cambridge, Polity, 2010. Print. 48

Barnes, Colin. “A Brief History of Discrimination and Disabled People.” The Disability Studies Reader. Ed. Lennard Davis. New York, Routledge, 2006. 20-32. Print.

Beauvoir, Simone De. The Second Sex. New York: Vintage Books, 1953.

Before and After Gallery. World Craniofacial Foundation. Web.

Bell, Chris. “Is Disability Studies Actually White Disability Studies?” The Disability Studies Reader. Ed. Lennard Davis. New York, Routledge, 2006. 374-382. Print.

Bell, Jamie. Message to Marley Hamrick. 16 Sept. 2011. E-mail.

Berger, Zoe E. and Louise J. Dalton and (2009) “Coping With a Cleft: Psychosocial Adjustment of Adolescents With a Cleft Lip and Palate and Their Parents.” The Cleft Palate- Craniofacial Journal, July 2009, Vol. 46, No. 4, pp. 435-443. Web.

Bermudez R, Luis E. "Operation Smile: Plastic Surgery With Few Resources." Lancet 356. (2000): s45. Academic Search Complete.

Bordo, Susan. “Cassie’s Hair.” Material Feminisms. Ed. Stacey Alaimo and Susan J. Jeckman. Bloomington, IN: Indiana UP, 2008. 400-422.

Bost, Suzanne. "From Race/Sex/Etc. to Glucose, Feeding Tube, and Mourning: The Shifting Matter of Chicana Feminism." Material Feminisms. Ed. Stacy Alaimo and Susan Hekman. Bloomington: Indiana UP, 2008. 340-72. Print.

Burr, Vivien. Social Constructionism. 2nd ed. New York: Routledge, 2003.

Butler, Judith. Gender Trouble: Feminism and the Subversion of Identity. New York: Routledge, 1990.

Carver, Roger. “Deaf Culture or Disability?” Transition (1992-1993): 6-7, 24-25. Cited in Wendell 1996.

Campbell, Fiona. “Refusing Able(ness): A Preliminary Conversation about Abelism.” Media/Culture 11.3 (2008). Print.

Clare, Eli. Exile and Pride: Disability, Queerness and Liberation. Cambridge, MA: South End, 2009. Print.

Combahee River Collective. "A Black Feminist Statement." This Bridge Called My Back: Writings by Radical Women of Color. Ed. Cherrie Moraga and loria Anzald a. New York: Kitchen Table: Women of Color, 1993. 210-18. Print.

Crenshaw, Kimberle. "Mapping the Margins: Intersectionality, Identity, Politics, and Violence

49

Against Women of Color." Critical Race Theory: the Key Writings That Formed the Movement. Ed. Kimberle Crenshaw, Neil Gotanda, Garry Pellar, and Kendall Thomas. New York: New, 1995. 357-83. Print.

------“Demarginalizing the Intersection of Race and Sex: A Black Feminsit Critique of Antidsicrimination Doctrine, Feminist Theory and Antiracist Politics.” University of Chicago Legal Forum, 1989. 139-67.

Crow, Liz. "Including All of Our Lives: Renewing the Social Model of Disability." Encounters with Strangers. Ed. Jenny Morris. Women's, 1996.

Davis, Kathy. "Intersectionality as Buzzword: A Sociology of Science Perspective on What Makes a Feminist Theory Successful." Feminist Theory 9.1 (2008): 67-85.

Davis, Lennard. Enforcing Normalcy: Disability, Deafness, and the Body. London: Verso, 1995.

Ehrenreich, Barbara. “Welcome to Cancerland.” Rep. Harper Magazine, 2001. Print.

"Facts about Cleft Lip and Palate." Birth Defects. Center for Disease Control and Prevention, 24 Feb. 2011. Web.

Fine, Michelle, and Adrienne Asch. Women with Disabilities: Essays in Psychology, Culture, and Politics. Philadelphia: Temple UP, 1988.

Finger, Anne. “Disability and Reproductive Rights.” Off Our Backs 13.9 (1982). 18-19.

Finkelstein, Vic. "The Commonality of Disability." Disabling Barriers-- Enabling Environments. Ed. John Swain, Sally French, Colin Barnes, and Carol Thomas. London: Sage, 1993. Web.

Fox, Dov. "Disability Selective Abortion and the ADA." The Utah Law Review (2009): 845-905.

Foucault, Michael. Discipline and Punish: The Birth of the Prison. New York: Vintage, 1979.

arland Thomson, Rosmarie.“Integrating Disability, Transforming Feminist Theory.” The Disability Studies Reader. Ed. Lennard Davis. New York, Routledge, 2006. 353-373.

------Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia UP, 1997. Print.

Gergen, Kenneth. An Invitation to Social Construction. London: Sage, 1999.

------"Social Psychology and the Wrong Revolution." European Journal of Social Psychology 19.5 (1989): 463-84.

Goffman, Erving. Stigma; Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ:

50

Prentice-Hall, 1963.

Goodman, Amy. "Disability Justice Activists Look at ‘Ways to Maintain Ablism’ and Counter ‘How Our Bodies Experience Trauma in the Medical-Industrial Complex’" Democracy Now!: The War and Peace Report. Web. 23 June. 2010.

Gould, Herbert Jay. "Hearing Loss and Cleft Palate: The Perspective of Time." The Cleft Palate- Craniofacial Journal 27.1 (1990): 36-39.

“ race.” World Craniofacial Foundation. Web.

Hacking, Ian. The Social Construction of What? Cambridge: Harvard UP, 1999.

Harper, Dennis, and David Peterson. "Children of the Philippines: Attitudes Toward Visible Physical Impairment." The Cleft Palate-Craniofacial Journal 38.6 (2001): 566-76. Print.

Harper, Dennis. "Children's Attitudes to Physical Differences among Youth from Western and Non-Western Cultures." The Cleft Palate-Craniofacial Journal 32.2 (1995): 114-19.

Harris, Amelia. Handicapped and Impaired in Great Britain. London: HMSO, 1971.

Hasler, Frances. "Developments in the Disabled People's Movement." Ed. Sally French. Disabling Barriers--enabling Environments. Ed. John Swain, Vic Finkelsten, and Mike Oliver. London: Sage Publications, 1993. 278-84.

Hong, Grace Kyungwon. "Introduction." The Ruptures of American Capital: Women of Color Feminism and the Culture of Immigrant Labor. Minneapolis: University of Minnesota, 2006. Vii-Xxxiv. Print.

Hughes, Bill, and Kevin Paterson. "The Social Model of Disability and the Disappearing Body: Towards a Sociology of Impairment." Disability & Society 12.3 (1997): 325-40.

"Jane Kaczmarek Today Show." Interview. About Smile Train: Media. Smile Train, 2010.

Kirby, Vicki. "Corporeal Habits: Addressing Essentialism Differently." Hypatia 6.3 (1991): 4- 24.

Klawiter, Maren. "Breast Cancer in Two Regimes: The Impact of Social Movements on Illness Experience." Sociology of Health and Illness 26.6 (2004): 845-74.

Kristeva, Julia. "Women's Time." Signs: Journal of Women in Culture and Society 7.1, 1981: 13-35.

Law, John, and Annemarie Mol. "Notes on Materiality and Sociality." The Sociological Review 43.2 (1995): 274-94.

51

Lorde, Audre. "The Master's Tools Will Never Dismantle the Master's House." Sister Outsider: Essays and Speeches. Trumansburg, NY: Crossing, 1984.

Lutz, Helma, Vivar Maria Teresa. Herrera, and Linda Supik. "Introduction." Framing Intersectionality: Debates on a Multi-faceted Concept in Gender Studies. Farnham: Ashgate, 2011. 1-22. Print.

Lykke, Nina. Feminist Studies: A Guide to Intersectional Theory, Methodology and Writing. New York: Routledge, 2010.

Ma, Pricilla. Smile Train Annual Report 2010. Rep. New York: Smile Train, 2010.

Maddern, Lynn, Julia Cadogan, and Michael Emerson. "‘Outlook’: A Psychological Service for Children with a Different Appearance." Clinical Child Psychology and Psychiatry 11.3 (2006): 431-43.

"Maria." Patient Stories. Operation Smile. Web.

Marsh, Jeffrey L. "To Cut or Not to Cut? A Surgeon's Perspective on Surgically Shaping Children." Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality. Ed. Erik Parens. Baltimore: Johns Hopkins UP, 2006. 113-124. Print.

Mayo Clinic. "Cleft Lip and Palate." Mayo Foundation for Medical Education and Research, Apr. 2010. Web.

McCall, Leslie. "The Complexity of Intersectionality." Signs: Journal of Women in Culture and Society 30.3 (2005): 1771-800.

McRuer, Robert. "Compulsory Able-Bodiedness and Queer/Disabled Existence." Crip Theory: Cultural Signs of Queerness and Disability. New York: NYUP, 2006. Print.

Millar, Keith, Aileen Bell, Adrian Bowman, Denise Brown, Tsz-Wai Lo, Paul Siebert, David Simmons, and Ashraf F. Ayoub. "Psychological Status as a Function of Residual Scarring and Facial Asymmetry after Surgical Repair of Cleft Lip and Palate." The Cleft Palate- Craniofacial Journal (2011).

Miller, Daniel. "Materiality: An Introduction." Materiality. Ed. George Steinmetz. Duke UP, 2005. 1-50.

Mitchell, David, and Sharon Snyder. The Body and Physical Difference: Discourses of Disability. Ann Arbor: University of Michigan, 1997.

Mohanty, Chandra. "“Under Western Eyes” Revisited: Feminist Solidarity through Anticapitalist Struggles." Feminist Review 30 (1988): 49-74.

Moraga, Cherrie. “Preface.” This Bridge Called My Back: Writings by Radical Women of Color.

52

Ed. Cherrie Moraga and loria Anzald a. New York: Kitchen Table: Women of Color, 1993. xiii-xix. Print.

Morris, Jenny. "Feminism and Disability." Feminist Review 43 (1993): 57-70.

------Pride Against Prejudice: Transforming Attitudes to Disability. Women’s Press: London, 1991.

Nash, Jennifer C. "Re-thinking Intersectionality." Feminist Review 89.1 (2008): 1-15.

Noar, Joe. "Questionarre Survey of Attitudes and Concerns of Patients with Cleft Lip and Palate and Their Parents." The Cleft Palate-Craniofacial Journal 28.3 (1991): 279-84.

Norman, Brian. "We" In Redux: The Combahee River Collective's "Black Feminist Statement." Differences: A Journal Of Feminist Cultural Studies 18.2 (2007): 103-132. Academic Search Complete. Web. 18 Dec. 2011.

Oliver, Michael. "The Social Model in Context." Understanding Disability: From Theory to Practice. New York: St. Martin's, 1996. 30-42. Print.

------"Re-defining Disability: A Challenge to Research." Ed. Sally French. Disabling Barriers--Enabling Environments. Ed. John Swain, Vic Finkelsten, and Mike Oliver. London: Sage Publications, 1993. 61-67.

------Social Work with Disabled People. London: Macmillan, for the British Association of Social Workers, 1983. Print.

“Our Work.” Operation Smile. Web.

Peterson, Linda. "Changing The World ... One Smile At A Time." Biography 1.1 (1997): 24. Academic Search Complete. Web.

Phoenix, Ann, and Pamela Pattynama. "Intersectionality." European Journal of Women's Studies 13.3 (2011): 187-92.

Porter Brown, Nell. "Scaling Up Charity: Smile Train's Brian Mullaney." Harvard Magazine, Sept. 2009. Web.

“The Problem.” Smile Train. Web.

Saal, Howard. "Classification and Description of Nonsyndromic Clefts." Cleft Lip and Palate: From Origin to Treatment. Ed. Diego Wyszynski. Oxford: Oxford UP, 2002. 47-52. Print.

Salyer, Kenneth. "Letter from the WCF Founder and Chairman." World Craniofacial Foundation.

53

Shakespheare, Tom. "The Social Model of Disability." The Disability Studies Reader. Ed. Lennard Davis. 2nd ed. Routledge, 2006. 197-204. Print.

Scheper-Hughes, Nancy. "Difference and Danger: The Cultural Dynamics of Childhood Stigma, Rejection, and Rescue." The Cleft Palate-Craniofacial Journal 27.3 (1990): 301- 310.

Siebers, Tobin. "Disability Experience on Trial." Material Feminisms. Ed. Stacy Alaimo and Susan Hekman. Bloomington: Indiana UP, 2008. 291-307. Print.

------“Disability and the Theory of Complex Embodiment.” Ed. Lennard Davis. New York, Routledge, 2006. 316-335.

Speech Development. Chapel Hill: Cleft Palate Foundation, 2001.

Spelman, Elizabeth V. Inessential Woman: Problems of Exclusion in Feminist Thought. Boston, MA: Beacon, 1988.

Strauss, Ronald. "Ethical Issues in the Care of Children with Cleft Lip and Palate." Cleft Lip and Palate: from Origin to Treatment. Ed. Diego Wyskynski. Oxford, Oxford UP, 2002. 458- 67. Print.

Suissa, Amnon Jacob. "Addiction To Cosmetic Surgery: Representations And Medicalization Of The Body." International Journal Of Mental Health & Addiction 6.4 (2008): 619-630. Academic Search Complete. Web.

Terzi, Lorella. "The Social Model Of Disability: A Philosophical Critique." Journal Of Applied Philosophy 21.2 (2004): 141-157. Academic Search Premier.

Thaller, Seth R., and Taik Jong Lee. "Microform Cleft Lip Associated with a Complete Cleft Palate." The Cleft Palate-Craniofacial Journal 32.3 (1995): 247-50.

Tong, Rosemarie. Feminist Thought: a More Comprehensive Introduction. Boulder: Westview, 2009. Print.

Union of the Physically Impaired Against Segregation and The Disability Alliance. "Fundamental Principles of Disability." Disability Studies Archive. University of Leeds, 22 Nov. 1975. Web. 13 Dec. 2011.

Watters, Ethan. Crazy like Us: The Globalization of the American Psyche. New York: Free, 2010.

Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability. New York: Routledge, 1996.

54

------"Toward a Feminist Theory of Disability." Hypatia 4.2 (1989): 104-24.

“What We Do.” World Craniofacial Foundation. Web.

“Who We Are.” World Craniofacial Foundation. Web.

Wulfsberg, Eric. "The Orofacial Examiniation: Normal and Abnormal Findings." Cleft Lip and Palate: From Origin to Treatment. Ed. Diego Wyszynski. Oxford: Oxford UP, 2002. 43- 46. Print.

Zola, Irving. “The Medicalization of Aging and Disability.” Advances in Medical Sociology. Greenwich: JAI 1991. 299-315.

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Appendix

Figure I: A picture of Grace from Zambia with Dr. Goran Jovic featured on the WCF’s website

Figure 2: An image from the home page of Operation Smile featuring Roma Downey, a famous actress, and Arifase, a teenager from Ethiopia who underwent cleft surgery.

Figure 3: An internet advertisement for Smile Train showing a before and after surgery picture.

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Figure 4: The WCF’s gallery showing patients with a variety of craniofacial conditions before and after surgery.

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