Disability Studies Quarterly
Spring 2004, Volume 24, No. 2
<www.dsq-sds.org>
Copyright 2004 by the Society
for Disability Studies


Whiteness, Normal Theory, and Disability Studies

Phil Smith, Ed.D.
Executive Director, Vermont Developmental Disabilities Council
E-mail: phils@wpgate1.ahs.state.vt.us

Abstract: Analogies can be drawn between social cartographies of disability and the landscape of race. Understanding these analogies can benefit understandings of both disability and race. Contrary to modernist understandings, disability, like race, is plural, socially constructed, founded on hidden ideologies, and a direct function of global capitalism. Deconstructing racism by postmodern critical theorists has led to the development of whiteness theories, which portray whiteness as a raced category that is chromatically absent to Whites, an unexamined and unexplored normative backdrop. As a result of this exploration of the terrain of whiteness, taxonomies of difference are seen to be created by processes of discrimination, rather than the other way around. For too long, constructions of race and disability have been conflated by the eugenic practices of modernist science. Whiteness underlies the oppression of people with disabilities. Disability studies scholars can learn much about disability and ableism by proposing a corollary to whiteness theories, that is, normal theories, as a way to unpack and dismantle the unspoken language of normative ideologies that create disability as a social category.




Whiteness, Normal Theory, and Disability Studies

"To resist whiteness means developing a politics of difference" (McLaren and Torres 1999, p. 59).

Analogies – often in the shape of metaphors – can be drawn between social cartographies of disability and the landscapes of race. Understanding these analogies can benefit understandings of disability and the concrete practices of the disability rights movement (Brandwein and Scotch 2001; Gordon and Rosenblum 2001). Borthwick notes rightly that there is a "complex relationship between racism and prejudice against people with disabilities" (Borthwick 1996, p. 403). This complex relationship is one worth unpacking, because it is likely that there are similar (sometimes simultaneous) oppressive structures underlying both social topographies, structures that cause substantial harm to some while benefiting others. Understanding the codes used in these cultural mappings can allow disability studies scholars to eliminate ability and disability binaries, to complexify what are now dualistic constructions, and by doing so create opportunities for justice, equality, and empowerment.

Whiteness is a normative, dominating, unexamined power that underlies the rationality of Eurocentric culture and thought. It serves to push to the margins not only those defined as not-White, but also those defined as not-Able. An understanding of the ways in which whiteness creates both racial and ability discrimination will be a useful tool for disability studies researchers in understanding the cultural construction of ability/disability. And an explication of a cross-disciplinary alliance between whiteness studies and disabilities studies will be useful in bringing new ideas, new vistas, to both fields.

In doing so, this text will be at times intentionally discursive, digressive, and desultory. In fact, I think it is essential that it do so, at least to some extent, because, as I have pointed out elsewhere, the language of standardized academia reinforces the razor wired borders of marginalia (Smith 2001, p. 32). It can only be partially so, however, for as poet Adrienne Rich (1971) says, "This is the oppressor's language yet I need it to talk to you" (p. 17).

Definitions and a Theoretical Framework

Before beginning an explication of whiteness and its relationship with disability, it may be helpful to begin by defining the borders of a couple of words used frequently by those in the scholarly terrain of disability studies. The first is the word disability itself. In using this term, I want to define it in opposition to the normative, positivist, monosemic, professionally-mapped thing, founded in disease and filth metaphors (Smith 1999a). Sibley (1995) has pointed out that the exclusion of those with differences, a process that places them in ghettos outside normative boundaries, is based on a need to separate the self from filth and dirt. Fear, ultimately, is what separates ability from disability, in part because dirt and filth are seen to cause harmful disease. Davis says the same thing when he notes that "...the disabled object is produced or constructed by the strong feelings of revulsion" (1995, p. 12).

Sibley comments that it all starts with "...the idea of dirt as a signifier of imperfection and inferiority, the reference point being the white, often male, physically and mentally able person" (1995, p. 14). Thomson (1997) also points to the relation of this metaphor of dirt to disability, drawing on the seminal work of Mary Douglas (1966). Thomson notes that disabilities "function as social dirt" (p. 33). Douglas says that society responds to anomalous cultural categories like disability in one of five ways: dichotomization, elimination, segregation, labeling it dangerous, and incorporating the category into ritual. Of these, only the last holds any positive hope, one that "...suggests the possibility of interpreting both dirt and disability not as discomforting abnormalities or intolerable ambiguities, but rather as the entitled bearers of a fresh view of reality" (Thomson 1997, p. 38).

Rather than a disease and filth-based metaphor of disability, I want to define its borders as polysemic, polyvocal, and culturally constructed, a much more difficult and much less reassuring project. Such an understanding of disability has been described as being a social model of disability, one in opposition to a medical model of disability. As Campbell and Oliver note, "...disabled people have redefined the problem of disability as the product of a disabling society rather than individual limitations or loss" (1996, p. 105).

Another word that it will be helpful to understand is ableism. Groch (1998) defines ableism "...as the belief in the natural physical and mental superiority of nondisabled people and the prejudice and discriminatory behavior that arise as a result of this belief" (p. 151). Like racism, ableism is also essentially ideological, rising from the same, mostly unexamined, "assumption of biological inferiority" (p. 202). It asserts that "people without disabilities are 'normal' and those with disabilities are somehow not equal" (Maluso 2001). Based in discrimination and oppression, it is a "devaluation of disability" (Hehir 2002, p. 3). Ableism is equivalent to the earlier term handicapism, a cultural artifact that was compared to racism and sexism (Bogdan and Biklen 1977). Much of this text will be an extended, at times tangential, and unpacking of the baggage around these words and discourses.

As I discuss disability and whiteness, race and normality in this text, it will be evident that I approach these topics from two simultaneous theoretical frameworks. In one, I suggest that issues of disability and race have lived, materialist bases in the world. These cultural artifacts are a function of capitalist, Western, positivist societies, and I propose understanding them from a critical theory perspective. In the other framework, I portray disability and race as socially constructed, without apparent basis in a material world.

These two frames are in some tension (some will say in clear and overt opposition), posing a theoretical dilemma, one for which I think there are at least partial answers. One has to do with the Althusserian (1994 [1971]) portrayal of ideology (and I assert that both race and disability are ideological), expressed as it is in the materialist institutions of society, which I'll discuss later.

Another answer may lie in the thinking of Alexa Schriempf (2001), who points out that neither materialist or constructivist perspectives (ideologies) fully resolve these kinds of complex cultural issues. She proposes an interactionist paradigm in which things are both social and material: "Materiality always already impacts the social – that is, bodies are not presocial nor are social practices divorced from materiality" (p.68). She proposes an interactionist dialogue between feminist and disability studies, not unlike the dialogue that I propose between whiteness and disability studies, recognizing bodies (and minds) as plastic, semiotic si(gh)tes for the interaction between the cultural and the material. This is a metaphor to which I am attracted, one that has the potential for avoiding the positivist, essentialist binarization of a multiple, simultaneous world. Still, I am tentative about these two answers, continuing to watch them swim in the waters of my mind.

In order to begin the exploration of the confluence of ability and racial terrains, it will be necessary, first, to explicate some of the ideologies of racism and the countervailing geography of critical whiteness studies.

Racism In Modernist Western Culture

"Colored: of a race other than the white" (Webster's Seventh New Collegiate Dictionary, p.164)

 

Succinctly, race is understood by many critical theorists and other progressive social scientists to be socially constructed (Alcoff 1998; Faery 1999; Frankenberg 1993; Gordon and Rosenblum 2001; Jay 1998; Kincheloe 1999; McLaren and Torres 1999; Stephenson 1997). Racism itself is created by, an invention of, Whites (Allen 1997; Jay 1998). The notion of race arose "...in the centuries of European colonialism and imperialism that followed the Renaissance" (Jay 1998, Paragraph 5). In the Americas, it was realized in the Colonial era (Faery 1999; Kincheloe 1999). One writer describes racism as being "manufactured" (Edge 2002, p. 85), an interesting choice of words given its growth as a result of capitalism.

Race has long been considered to be "biological and immutable" (Stephenson 1997, Paragraph 3). Race is something that cannot be changed – it is inherent in (and on) the bodies of raced subjects. While this understanding is not accepted by current progressive social science, it continues to be the dominant cartography of race in most academic landscapes (McLaren and Torres 1999). In fact, because this understanding of race is not overtly critiqued, the idea that "...humanity exists as genetically distinct 'racial groups' marked by a specific combination of biologically defined or imagined phenotypical characteristics and discrete cultural practices" (McLaren and Torres 1999, p. 46) continues to undergird popular and educational – including special educational – thought and practice. Modernist notions of race were clearly influenced by pseudo-scientific eugenicist research in the Victorian era, creating visions of Blacks as morally and intellectually inferior, and as savage (Baker 1998). These ideas continue into the present day, almost unbelievably, in current eugenic research, writing, and scholarship of late modernism.

Even the field of biology has come to distance itself from this geography of race (Jay 1998). As a result of the Genome Project, geneticists exploring the human genome recognize that people perceived to be of different races are virtually identical at the genetic level. Marchant (2001) quotes Luigi Calli-Sforza from Stanford University, who notes that "the differences between people of the same races are so large that it's ridiculous to think of races as different – or as even existing" (p.7). Interestingly, eugenicist scholars in the late 20th century perceive such statements as being counter to the findings of so-called empirical science, and assert that human genome research claims the biological reality of race (Whitney 1997).

These reified and essentialized constructions of race are created by racist ideologies. Racism is defined bluntly and cogently as "an ideological ethnocentric diseased set of beliefs... based on well-rounded ignorance..., viciousness, blind unshakable confidence, racial mythologies, and contradictory facts and beliefs" (Iverson 2002). Racism is institutionalized in American culture – in fact, there is a "popular and academic notion that racism is a 'natural,' if irritating, phenomenon" (Morrison 1992, p.7). Institutional racism is always "something about nonwhites..." (Zack 1999, p. 81) and "refers to dimensions of constraint in nonwhite life that are held in place by customs and practices within institutions" (Zack 1999, p. 82). These customs and practices can be described as a function of prejudice and power (Walker 1999). They result in ongoing segregation and oppression (Lewis 2001). They are created by a set of values seen to be at the core of American society: "autonomy, authority, newness and difference, [and] absolute power... (Morrison 1992, p.44)". Racism, institutionalized, is expressed in the material processes of social organizations and cultural practices.

Some have begun to regard race from the hilltops of a more diverse landscape, in which racism is seen to be institutionalized and culturally created. For example, they view racism as plural, rather than singular, as a set of multiple racisms (Lopez 2001; McLaren and Torres 1999). Many of these multiple manifestations of racisms remain hidden from view, features of social landscapes that are very rarely drawn on the maps of cultural topography (Lopez 2001). Because of this, "...racist practices may be routinely enacted by people who do not consciously accept racist views" (Stephenson 1997, Paragraph 10). As undrawn landscapes, such racist practices are unacknowledged but ever-present in the daily experience of Western, and especially American, culture (Parker and Lynn 2002). Whites may claim (and often do) that they are not racist, and yet continue to act unconsciously in ways that oppress Blacks.

In this way, race and racism come to be seen as metaphorical (McLaren and Torres 1999; Morrison 1992). In the creation of race as a metaphor, racial categories are given qualities felt to be natural and equivalent to the category, to assume aspects that are understood to be at the essence of a particular category. Through these processes of reification and essentialization, racial categorizations become literally "imbued with negative meanings or inscriptions" (Stephenson 1997, Paragraph 6). They are culturally-created stereotypes of action, thought, and meaning forced on the bodies of racialized others. This metaphor of racism has become an essential, if invisible and unexplicated, condition of Western and American culture (Morrison 1992).

Finally, an important critical analysis and understanding of the meaning of racism is that its impact is socio-economic and class-based (Allen 1994; Frankenberg 1993). People of color are denied material equality as much as political or cultural equality in a society that is dominated by White privilege (Bennett 2001; Giroux 1997). That is, it is argued that racism arose as a means of social control by ruling classes to maintain social and economic dominance over working (slave) classes: it is a political act (Allen 1994). Thompson (1999) says that "racism involves material conditions, power, legal status, and privilege, as well as prejudice" (p. 143).

Stated more directly, racism is a direct function of global capitalism (how this occurs will be discussed more fully later), and will only disappear when capitalism disappears (McLaren and Torres 1999). Critical race theorists go so far as to argue "that racism is not aberrant but rather the natural order of American life" (Asch 2001, Paragraph 2), at least as it is currently constructed. Just as capitalist ideology is at the root of American culture, so its corollary, racism, is deeply embedded in the institutions of modernist, positivist society of which the U.S. is perhaps the most exemplary.

Whiteness Theory

"Whiteness is the sensation of those colors perceived by the human eye as being white" (Puebla 2001).

 

This process of socially deconstructing racisms has led, in part, to a recognition that racisms are a function of the invisibility of whiteness for Whites, a kind of chromatic blindness (Frankenberg 1993; Nayak 1997). This is in contrast to the ability of Blacks to understand and unpack whiteness (Nayak 1997). Whiteness becomes for Whites, then, "a form of social amnesia" (McLaren and Torres 1999, p. 56), "forgetting" (Cornford 1997, Paragraph 21), an "absence" (Nayak 1997, p. 69), and a "delusion" (Jay 1998). Whites cannot see that they are raced – they live in a world which is inherently a-ideological, a-racial.

Whiteness is itself socially, historically, and culturally constructed (Babb 1998; Jay 1998; Kincheloe 1999; McLaren and Torres 1999; Stephenson 1997). That is, it is not an objective, quantifiable, perhaps not even finally-definable category, but rather a quality inferred on some at the expense of others that is always shifting. It structures the lives of Blacks and Whites, in the same ways that the lives of men and women are structured by gender, or that the lives of heterosexual and homosexual people are structured by their sexuality (Frankenberg 1993).

Whiteness has no meaning, no certain description, outside of the meaning given it by Western, or more specifically, American culture. In fact, poet Toni Morrison (1992) comments that "deep within the word 'American' is its association with race... American means white..." (p. 47).

Rather than describing an objective category of persons – it is, after all, "...a variable entity" (Babb 1998, p.22) – it is a quality "sustained through hegemony, a complex network of cultural creations..." (Babb 1998, p.4). It can best be defined as "a system of privileges accorded to those with white skin" (Babb 1998, p. 9). Like racism, whiteness, too, is ideological (Babb, 1998).

In fact, "whiteness depends on blackness for its very definition" (Jay 1998, Paragraph 8). It is defined only in terms of being not-black, not-colored (Babb 1998; Morrison 1992). It exists because of "the shadow that is companion... a dark and abiding presence..." (Morrison 1992, p.33). Whiteness came into being as blackness was created in the era of slave ownership in the Americas (Faery 1999; Kincheloe 1999). Whiteness is self-referential – it is defined by what it is not: "If you are white, you are not non-white" (Cornford 1997, Paragraph 2), or "on not being 'colored'" (Hedges 1995, Paragraph 5). To say that it is hard to define is certainly an understatement (Kincheloe 1999).

More importantly, perhaps, whiteness is an unexamined and unexplored norm to which other "races" are compared and contrasted (Babb 1998; Hedges 1995; Nayak 1997; Thompson 1999). In fact, when Whites construct taxonomies of race, they do not perceive that they themselves are raced. Whiteness imbues those so constructed with privileges not accessible to those constructed as non-white (Frankenberg 1993; Hedges 1995; Ignatiev 1997; Jay 1998; Nayak 1997; Thompson 1999). Legal structures and systems benefit Whites at the expense of those who are not white (McLaren and Torres 1999; Thompson 1999).

Whiteness is "an oppressive power" (Thompson 1999, p.142), one that Whites typically don't recognize exists. In meetings, Whites are given the privilege of voice; in the workplace, they are given the privilege of earnings. Whiteness is also a "cultural orientation" and a "political position" (Thompson 1999, p.146). Assuming its ideological nature, expressed through social institutions, it can be nothing but cultural and political.

It's also "the suppression of culture" (Cornford 1997, Paragraph 10). By its privileged existence, it forces other cultural expressions into the background, hazy visions of its own clear form. Whiteness is also "a category that maintains its own power" (Cuomo 1999, p. 57) – its privilege reinforces privilege, and denies access to those who seek its power. In more poetic terms, Whiteness is "...mute, meaningless, unfathomable, pointless, frozen, veiled, curtained, dreaded, senseless, implacable" (Morrison 1992, p. 59). A map without contours or understood symbols, it hides behind a blank and untranslated semiotics of power.

Whiteness is paradoxical. In denying its own existence, in denying the importance of race through a color-blind ideology, it makes racism more prevalent and powerful: "...color-blind ideology serves to explain and thus protect the status quo – the current racial formation... Moreover, it does all this as it enables people to feel as if they are on righteous racial terrain" (Lewis 2001, p. 801).

Whiteness is "defined by its blandness and avoidance of controversy or risk, by its cleanliness as absence" (Cornford 1997, Paragraph 9). It implies racelessness (Thompson 1999). And "whiteness displaces blackness and brownness – specific forms of non-whiteness – into signifiers of deviance and criminality" (McLaren and Torres 1999, p. 57). Variation is forced to the margin of power terrains. Whiteness is presumed to be singular, an aggregated totality, a gross ensemble, one whole bulky mass.

Whiteness regulates gender and sexuality (Nayak 1997). Whiteness, as an essential normative cultural structure, impacts all aspects of social relations, including understandings of man/woman and heterosexual/homosexual binaries. Feminist scholars have pointed to ways that explore whiteness as a social location expressing cultural dominance in human relationships (Frankenberg 1993). Miscegenation has played an important role throughout American history, up to and including the modernist period (Frankenberg 1993). And so it is that metaphors "of masculinised black dangerous and feminized white vulnerability" have played themselves out on the bodies and minds of men and women in Western culture (Neal 1998, Paragraph 5.4).

Whiteness is a function of capitalism (Cornford 1997). That is, it maintains a status quo of social hierarchies ensuring that Whites continue to accumulate wealth quite literally on the backs of people of color (Newitz and Wray 1997). It ensures that a set of unearned but real financial and social privileges are maintained for Whites at the expense of others, in spheres that include housing, banking, property ownership, access to capital, and employment (Kincheloe 1999; Stephenson 1997).

Whiteness is also inextricably tied to the rationalist thought of late Western modernism, and is at the foundation of positivist science (Kincheloe 1999). The other (in this case, non-White racial identity) is created by the White core of Western European reason and rationalism developed by Enlightenment thinkers (Kincheloe 1999). In so doing, Whiteness becomes basic to modernism and positivism – whiteness is the only way in which the world can be understood. It has become so integrally connected to these normative constructions that to consider modernism, to consider science, to consider technology – in fact, to consider everything that is known and thought in the monolith of the Western cultural hegemony – is to consider whiteness. Whiteness as a normative, rationalist, modernist cultural structure comes to undergird all that is essential to American society. Whiteness becomes "impenetrable" (Morrison 1992, p. 33), it "cannot be separated from hegemony" (Kincheloe 1999, Paragraph 1).

One needs to be cautious about fully conflating whiteness with all white people. White people are a diverse and complex lot (Kincheloe 1999). And "it is not contradictory to argue that whiteness is a marker of privilege but that all white people are not able to take advantage of that privilege" (Kincheloe 1999, Paragraph 13). Working class Whites, those who are significantly impoverished, those who are sometimes called poor whites or "white trash," cannot access the coded and racialized privilege assumed by more elite Whites (Newitz and Wray 1997). Hierarchy occurs not only through whiteness but also within it.

The work of whiteness studies, of a theory of whiteness, then, is a work of "making whiteness visible to Whites – exposing the discourses, the social and cultural practices, and the material conditions that cloak whiteness and hide its dominating effects" (Wray and Newitz 1997, p. 4). Whiteness studies seek to expose ways in which "white identity is neither pure nor unchanging – that its genealogy is mixed" (Hedges 1995, Paragraph 8). Such a project is in some sense inherently pedagogical, and in fact implies a critical pedagogy (Kincheloe 1999).

Whiteness theories are inherently postmodern in intent and scope:

Rather than attempting to correct erroneous views that lend themselves to racism, whiteness theories begin with the recognition that because terms like Black and White (or White/non-white or White/"other") are constructed in binary opposition, it is impossible to rescue blackness or brownness from its deviant status without deconstructing the whiteness against which deviance is measured. By attending to how whiteness is constructed and maintained as a norm, whiteness theorizing displaces questions about the "underprivileged" status of non-whites to instead expose the systematic privileging of whites (Thompson 1999, p. 146).

Whiteness studies avoids exploring racial differences, and instead looks at the construction of race and how it is constructed for the benefit of some and not others. And it challenges, by making whiteness visible, the power inherent in whiteness (McLaren and Torres 1999). This is dangerous inquiry, because it threatens the hegemony of White status, as well as the status quo of most social and educational research.

Whiteness studies needs to move beyond merely understanding. Some argue that a critical pedagogy of whiteness must be developed, one that will cause "...Whites to rethink their identity around a new, progressive, assertive, counter-hegemonic, anti-racist notion of whiteness" (Kincheloe 1999, Paragraph 50).

Some have asserted that discrimination does not occur because of difference, but instead that taxonomies of difference are created by processes of discrimination (McLaren and Torres 1999). These taxonomic constructs arrange hierarchies of good and bad, again through processes of reification and essentialization. But it is important to recognize that it is discriminatory practices – specific actions of inequality – that create differences between groups, and not the other way around.

Invisible Ideology

"Ideologies tell particular kinds of stories about the way the world works" (Lewis 2001, p. 799).

Some have begun to understand racism as an ideology, a discourse, and a process (McLaren and Torres 1999). Because the raced nature of whiteness is invisible to Whites, however, the ideological character of racism also remains hidden, becoming a kind of visual ellipsis, a scopic omission. Given such an omission, ideology and racism are portrayed as binaries, opposing poles, rather than opposite sides of a single coin.

Philosopher Louis Althusser's exploration of ideology has been perhaps the most important work on the topic in the 20th century. He describes ideology as being unconscious, "a matter of the lived relation between men [sic] and their world" (1994 [1965], p. 89). Ideology is underneath all that humans do and experience, whether they have consciousness of it or not. It becomes enmeshed in and expressed by social and cultural institutions (Althusser suggests that education is perhaps the most important of these modern institutions) – what Althusser calls Ideological State Apparatuses (1994 [1971]).

Althusser asserts that ideology is materially expressed. It takes form in the cultural practices of given societies. In this way, he believes, there is a clear link between ideology and the material basis of global capitalism. He goes on to comment on the process of ideology he calls interpellation, in which individuals are recruited into subject positions not of their own choosing. People are forced to assume subject positions (say, for example, positions of whiteness, and oppression) by the ideologies that play out in their material lives. Through the process of interpellation, and through the use of social and cultural apparatuses, capitalism creates both disability and race. These processes are for the most part unconscious, perhaps even undesired (at least by some), yet nonetheless real and inherent.

In an important commentary on the paradoxical nature of ideology, Althusser comments that what thus seems to take place outside ideology..., in reality takes place in ideology. What really takes place in ideology seems therefore to take place outside it. That is why those who are in ideology believe themselves by definition outside ideology... the accusation of being in ideology only applies to others, never to oneself. (1994 [1971], p. 109). As an example, whites do not perceive their whiteness to be racial, and ideological. (It strikes me that Althusser's thinking predates, but parallels in ways that seem useful, the thinking of Schriempf [2001], noted earlier). In Althusser's framework, clearly, science does not perceive itself as being ideological.

So it is that scientific research is often portrayed – and this is especially true in fields of research exploring disability, as outside the boundaries of ideological cartographies, residing instead within landscapes of inherent neutrality (Mulick 1990). Disability studies scholar Rosemary Garland Thomson notes that much of science "...depends upon the fantasy of objectivity and sees regularity rather than exceptionality as founding epistemology..." (1996, p. 3).

For example, B.F. Skinner (1971), considered by many to be the founder of behaviorism (an academic category now ensconced at the center of both special education topographies and much of what is taken to be the territory of supports for people with disabilities), felt that "the technology of behavior modification is ethically neutral. It can be used by villain or saint. There is nothing in a methodology which determines the values governing its use" (p. 150). Skinner was neither the first – nor the last – to espouse such a viewpoint.

Feminist researchers, along with some in the field of disability studies, have come to believe the opposite: that research is inherently ideological (Maguire 1996; Smith 1999a; Smith 2001a). Denying the ideology of research and practice, as Skinner did, is an ideological statement in itself. Disability rights activist Marta Russell was much more blunt: "science has always been controlled by those who pay the bills" (1998, p. 18). Or, as disability studies scholar Susan Gabel put it, "there are no innocent paradigms" (2002).

The work of disability studies should be a work of understanding the ideological underpinnings shoring up social constructions of disability, special education, and disability research. As well, it will be important for research enterprises – educational research in particular, and by implication, special education research – to explore and critique its previously-unexamined ideologically racist underpinnings (Lopez 2001).

Unspoken and assumed claims of research neutrality are similar to the unspoken and assumed claims that Whites are not raced. Such presumptions privilege the norm and prevent both researchers and Whites from understanding and questioning their ideological roles and identities.

 

Exposing Conflated Terrains of Disability and Race

"...racial patterns are never natural orders, and ... they thus can and must be collectively dismantled." (Pollock 2002, p. 10)

It is very true that minorities are at greater risk for acquiring disability labels and losing ability capacities, often as a result of impoverishment (O'Connor 1993). Difficulty in obtaining services for African Americans may include issues including impoverishment, discrimination, and services that are not culturally competent (Robinson 2002). Still, social terrains of disability and race are often conflated, merged in ways that cause stereotyped characteristics of one to be assumed by the other. What has been called a visual hegemony places value on some at the expense of others because of perceptions of group appearance (Smith 1999b; Crossley 1992). Because the bodies of people with disabilities are seen to be different from those of white, Eurocentric, rich – even middle class – men, they are placed in marginalized social landscapes.

And race has been tied in basic ways to understandings and metaphors of developmental disability. For example, prior to the label of Down syndrome used by modernist medical science, the term Mongolism was the dominant term (Borthwick 1996; Gould 1996; Kliewer 1998). The construction of people with disabilities as freaks is "steeped in racism, imperialism, and handicapism..." (Bogdan 1988, p. 278). Psychiatric survivors have also experienced a "potent fusion of insanity and blackness" as the result of racialized terror felt by Whites (Neal 1998, Paragraph 4.1).

The heritage of eugenicist thought and ideology on both understandings of race and disability has been powerful, continuing into the present moment. Recently, an entire issue of one of the most prestigious journals concerning (positivist) research in developmental disability, the American Journal on Mental Retardation, using as its base research "studying persons with distinctive genetic etiologies of mental retardation", explored behavioral "genotype-phenotype correlations" (Dykins 2001, p.1).

Such a project implies a eugenic foundationalist approach that is rooted in the universalization of modernist whiteness. For, as Henry Giroux notes," 'whiteness' as a cultural practice promotes race-based hierarchies..." (1997 p. 295). The creation of these taxonomies of difference, taxonomies that can be defined in both racial and disability terms, is precisely the work of modernist eugenic "science" (Gould 1996; Kliewer and Drake 1998; Smith 1999b; Smith 2001b). Eugenics is a social tool that provides "...regulatory mechanisms in order to qualify, measure, appraise, and heirarchize" (Jones 1995, p. 164) people perceived to be outside the boundaries of normative landscapes.

Race and disability have resided in the same social terrains throughout their history, especially so in educational territories. Eugenicist, modernist science has been instrumental in conflating the cultural topography of disability and race. For example, research has shown over and over that there is a relationship between eligibility for special education services and race (American Youth Policy Forum and Center on Education Policy 2002; Bennett 2001; Deseret News 2001; Lashley and Terhune 2000; Harvard University Civil Rights Project 2000; Pollock 2002). Students of color experience "disproportionately high rates of school dropouts, suspensions, and expulsions" (Bennett 2001, p. 183).

One of the most recent of these studies revealed that "...black public school students are three times as likely as whites to be identified as mentally retarded and in need of special-education services..." (Tato 2001, Paragraph 4). Another source notes that African-American students are mis-identified as being mentally retarded or emotionally disturbed at much higher rates than whites (American Youth Policy Forum and Center on Education Policy 2002). The Harvard University Civil Rights Project (2000) points out that special education has been "...a place to segregate minorities and students with disabilities... As a result, minority children deemed eligible for special education are in jeopardy of being discriminated against on the grounds of both race and disability" (Paragraph 2). While progressive scholars blame poverty that is so typically experienced by minority groups, as well as the dominating institutionalized racism of current assessment methodology as causes for these differences, modern eugenic researchers continue to assert innate genetic causes (Eisenman 1992; Rushton 1998). Other researchers point to socio-political explanations for the labeling of minority groups (Apple 1996; Gould 1996; Kozol 1991; Sleeter 1995).

Similarly, for people labeled as having Down syndrome, those who are Black or from other marginalized racial groups die at a much earlier age than those described as white – their median age of death is half that of whites (Friedman 2001). Differences in care, based on social disparities, are suggested as a possible reason for these findings.

The same kinds of research stories can be found in the area of psychiatric disability. Neal (1998), reporting the work of Sashidaran and Francis (1993), points out that "African-Caribbean and South Asian people are diagnosed with a major psychotic illness at five times the rate of the general population and 60% of black people enter psychiatric hospitals via Section 136 of the 1983 Mental Health Act compared to 10 – 15% generally" (Paragraph 4.1). Again, institutionalized racist ideologies that are inherent in Western culture might be suggested as a reason for these differences.

 

Parallels Between Minorities of Race and Disability

"...calling a particular group a minority justifies the subordination of that group." (Groch 1998, p.106)

A number of parallels can be drawn between minority groups named by race, and the minority group named by disability, parallels that are useful when they avoid conflation. One example of ways that minority groups of race and disability are invented and expressed in parallel is that both race and disability represent socially constructed geographies (Davis 1995; Gordon and Rosenblum 2001; Groch, 1998). Disability as a social construction results in the stereotyped perceptions of qualities "inherent" in people with disabilities. Thomson (1997) describes this process in textual terms when she notes that "...representation... relies upon cultural assumptions to fill in missing details" (p. 11) that are inevitable in any description. She goes on to note that such representations prevent narratives about people with disabilities from reflecting complex and dynamic qualities.

Rather than being trapped in definitions created by eugenicist and behaviorist science, a social model of disability might define disability as "the process which happens when one group of people create barriers by designing a world only for their way of living, taking no account of the impairments other people have" (New Zealand Ministry of Health 2001, p. 7).

Building from this social model, but with some differences, a minority-group model of disability has been proposed in the United States especially, drawing on the learning and action performed by generations of civil rights activists in the area of race. Critics have argued recently that this model is inadequate, urging that it be replaced "with language that speaks of disability as a form of human variation and that calls for a universal design and universalizing of disability (Asch 2001, Paragraph 10).

Still, both minority groups based on race and minority groups based on disability experience discomfort and fear, discrimination, persecution, and segregation (Yates, Ortiz, and Anderson 1998). Both find it necessary to develop strategies for coping with and adapting to the hegemony of the dominant culture (Yates, Ortiz, and Anderson 1998). Both groups, because of perceived inequality with the dominant culture, "are stigmatized in terms of assumed inferior traits or characteristics" (O'Connor 1993, p.1). And both have developed cultures that can be differentiated from that of the dominant culture, in areas that include distinct belief and value systems, as well as humor (Yates, Ortiz, and Anderson 1998).

Groch (1998), following the work of Young (1990), asserts that oppression takes five forms: marginalization, exploitation, powerlessness, cultural imperialism, and violence. She goes on to note that social groups that experience any one of these oppressive modes constitute an oppressed group. Like racial categories, Groch points out the ways in which disability clearly forms an oppressed social grouping as a function of ableism.

Clearly, there are important parallels between racism and ableism, including prejudice, stereotyping, and institutionalized discrimination (O'Connor 1993). They both, Groch (1998) notes, "have been deeply embedded in American's collective consciousness" (p. 202). And both are essentially ideological. They are invisible ideologies, hidden from view behind the screen of hegemonic oppression.

Groch goes on to note differences between these ideologies, believing that "ableism is based primarily on the paternalistic attitudes associated with disease, while racism remains anchored in hatred and fear" (p. 202). While she makes a strong case for these differences, I would argue that ableist ideology is as much based in hate and fear as is racism, and that racism and disease have also been conflated.

The disease metaphor has been a powerful way of speaking about and creating bodily and cultural difference. Again, this discourse is founded on what Sibley (1995) has pointed out as being an essential modernist fear, the fear of filth and dirt. Because Western (White) culture loathes that which is dirty, it creates disability and race as ideological and metaphoric tools to exclude what it perceives as repulsive and revolting.

Finally, both racial and disability groupings experience pressure from the dominant culture to conform to its perceived norms (Yates, Ortiz, and Anderson 1998). This pressure can be negative, assimilative (pulling in) – that is, enforcing the norms of the dominant culture at the expense of the other. Or the pressure can be positive, or enfringing (pushing away) – that is, keeping the other at the margins because of unwillingness to submit. Assimilative pressure can appear, in racial terms, as color-blindness, the often liberal stance that asserts that race should not matter when it comes to employment, voting, etc. (O'Connor 1993). Disability-blindness is an equivalent liberal stance.

Either way, it seems clear that those people who fall into categories of both racial minorities and disability minorities experience a particular kind of complex discrimination (O'Connor 1993). This kind of discrimination has been called a simultaneous oppression (Stuart 1992). However it is described, there is clearly "...a 'complex struggle' that disabled people from more than one oppressed group face..." (Campbell and Oliver 1996, p. 131). The complexity of this struggle is evidenced in the way simultaneous oppressions wind their way through the text of Eli Clare, in which "gender reaches into disability; disability wraps around class; class strains against abuse; abuse snarls into sexuality; sexuality folds on top of race" (1999, p. 123).

What would it mean for whiteness to discover and recognize disability within its midst? It is here, in fact, that the creation of something like a normal theory begins – to see that both whiteness and the normative arise out of creating the other by dirtying that which is different. The intersection of this particular simultaneous oppression holds particular meaning for whiteness studies as well as disability studies, because it has the potential for opening the way to an exploration of how cultural construction of the normative creates both disability and race.

Creating a Theory of the Normal

"We live in a world of norms" (Davis 1995, p. 23).

Some medical ethicists have asserted that the concept of disability is not defined in contradiction to normality (Harris 2001). In opposition to this notion is the exciting and growing body of disabilities studies scholarship that has begun exploring the construction of normalcy in Western culture. Importantly, these normal theories are tied closely to whiteness studies. For example, Lennard Davis (1995) notes that "...as with recent scholarship on race, which has turned its attention to whiteness, I would like to focus not so much on the construction of disability as on the construction of normalcy" (p.23). Davis recognizes what Thomson also notes, that the idea of normal can only be seen by understanding disability, because the cultural marking of otherness bound up in disability "...obscures and neutralizes the normative figure..." (1997, p.8).

In Thomson's earlier work, looking at what she calls freak discourse and enfreakment, she discusses ways in which the freak show's cultural work is to make the physical particularity of the freak into a hypervisible text against which the viewer's indistinguishable body fades into a seemingly neutral, tractable, and invulnerable instrument of the autonomous will, suitable to the uniform abstract citizenry democracy institutes (1996, p.11).

By creating a marginalized other in the form of disability, the privilege of the center – the normal – becomes hidden from view, and its power and control over society becomes presumptive. Members within the culture cannot even see the center (the normal) – it is "natural, undisputed, and unremarked" (Thomson 1997, p. 20). In this context, Russell's question, "...who does 'normal' serve?" (1998, p. 19) becomes an essential one. Normal and abnormal become absolute categories that "depend on each other for their existence and depend on the maintenance of the opposition for their meaning" (Linton 1998, p.23). The binary formation of normal and abnormal is reinforced by the prefix dis- in disability: it "...connotes separation, taking apart, sundering in two" (Linton 1998, p. 30).

Davis goes on to point out that the concept of the norm arose during the industrial era of the 19th century, and along with it what he calls the "...ideological consolidation of the power of the bourgeoisie" (p. 49). Eugenics, he indicates, created the normal, and, through the use of statistics, the abnormal. By numbering the normal, eugenicist science [sic] creates a means for ranking the abnormal and, in doing so, establishing its taxonomic distance from the ideal human figure (Thomson 1997). The history of disability in the United States is one of increased pathologizing (Trent 2002).

Thomson calls the normal (privileged) position, the normate, and defines it as "... the constructed identity of those who, by way of the bodily configurations and cultural capital they assume, can step into a position of authority and wield the power it grants them" (1997, p.8). Importantly, she goes on to indicate that "...without the pathological to give form to the normal, the taxonomies of bodily value that underlie political, social, and economic arrangements would collapse" (Thomson 1997, p. 20). The creation of disability enforces the privilege of normality and prevents it from being seen or understood.

Trent points to the social implications of this enforcement, in discussing its impact on persons labeled as having intellectual disabilities: "By restricting the gaze to the person with 'it,' issues of the maldistribution of resources, status, and power so prominent in the history of the lives of most mentally retarded (and mentally accelerated) people remain muted" (1994, p. 274). In so doing, the master status categories inhabited by the normate subject maintain not just cognitive authority, but economic, socio-political, and cultural authority as well.

For some, disability is defined as being outside the boundaries of what is biomedically typical. Yet, as feminist and disability studies scholar Susan Wendell points out, the concept of what constitutes biomedically typical ignores the variation of human ability (1996). Disability and ability are a function of environment, rather than what are presumed to be innate characteristics. She goes on to point out that "...the belief that 'the disabled' is a biological category is like the belief that 'Black' is a biological category, in that it masks the social functions and injustices that underlie the assignment of people to these groups" (Wendell 1996, p. 24).

Oliver (1996) claims that normality does not exist, and that it is ideological. Normality is predicated on a notion of humanity as being undifferentiated – there are only similarities between people. In reality, says Oliver, "...there is only difference" (p. 88). People with disabilities that reject normative ideologies threaten the medical and rehabilitative production of disability.

What Does Whiteness Studies Have To Do With Disability Studies?

"Revisionist scholarship has redirected our interpretations of race, class, and gender but has yet to fully address a fundamental component in our historical identity: physical ability and its underlying concept of normality" (Burch 2000, p. 393).

There is substantial benefit in comparing the ways racism and ableism are understood and constructed. Disability studies scholars can better describe and explore terrains ability and disability when they understand shared constructions of racism. For example, Gordon and Rosenblum (2001) have looked at "social processes in which categories of people are (1) named, (2) aggregated and disaggregated, (3) dichotomized and stigmatized, and (4) denied the attributes valued in the culture" (p.6).

They point out that master-status categories of able-bodied and disabled are commonly understood to be separate, distinct, binary, phenotypic constructions, in much the same ways that categories of race – along with social categories of gender and sexual orientation - are created. Like racial categories, understandings of able-bodied and disabled are created through cultural processes of reification and essentialization (Smith 1999b).

In the same way that disparate groups are brought together under the single lingual framework of "people of color," varied disability identity groupings are aggregated as a monolithic "people with disabilities" grouping (Horwitz, Kerker, Owens, and Zigler 2000). Such a grouping is "a temporary and strategic alliance susceptible to disaggregation at virtually any point" (Gordon and Rosenblum 2001, p.11).

These processes of naming and aggregating result in reified constructions perceived as negative by mainstream cultural inhabitants (Gordon and Rosenblum 2001; Smith 1999b). For people categorized as disabled, they are constructed as less than human, and freaks (Bogdan 1988; Crossley 1997). Such categories are not, of course, limited to people with disabilities. People who are constructed as not-white, for example, Native Americans, experience the same aggregating classification processes, and as a result are seen to be "less-than-human entities, unworthy of basic human decency..." (Vickers 1998, p. 27). Black people become categorized as "...dark, unconscious, and uncivilized..." (Vickers 1998, p. 32).

As a result of these naming processes, people with disabilities have been subject to iatrogenic and eugenicist attack, sanctioned by projects including exploration of the human genome, forced and "voluntary" sterilization, "physician-assisted suicide", and other death-making processes of modernist science designed to eradicate and eliminate difference (Brady, Briton, and Grover 2001; Brady and Grover 1997; Derbyshire 2001; Dong-Sheng 1981; Gordon and Rosenblum 2001; Philipkoski 2001; Smith 1999b; Wolbring 2001).

In ways similar to those in which marginalized racial groupings have been forced to live outside the boundaries of normalized white landscapes, segregation into literal and virtual disability ghettos has been the norm in modernist Western culture (Groch 1998; Smith 1999b). People with disabilities are denied even basic health care, so that those labeled as having so-called mental retardation have a life expectancy that is as little as two-thirds – or less – that of the total population (Horwitz, Kerker, Owens, and Zigler 2000). And people with disabilities are at significant risk for violence in the form of sexual, physical, mental, emotional, and verbal abuse in their lives (Horwitz, Kerker, Owens, and Zigler 2000; Sobsey and Doe 1991; Smith 2001c; Sullivan and Knutson 2000). Some have suggested that the creation of the institutional framework of special education itself has served "...to provide an education for 'normal' students unimpeded by students who are troublesome, in the widest possible sense" (Tomlinson 1995, p. 127).

Groch (1998) has pointedly noted that both racism and ableism are ideologies, "with most Americans seldom questioning their legitimacy" (p. 202). By "most Americans," I understand her to mean "most white, able-bodied Americans." The clarification is significant, I believe, because it begins to explore the invisibility of ability, what some see as "normal," for those who define others as disabled. Doing so denies the normality of disability, the ways in which what is portrayed as outside boundaries of normative landscapes by the ideology of eugenicist ableism is, from critical theory and disability studies perspectives, in fact normative.

Others have also pointed out the invisibility of ability, of being able-bodied. For example, "there are few names that refer to that status except those in currency within the disabled community such as 'able-bodied', 'nondisabled,' and 'abled" (Gordon and Rosenblum 2001, p.13). In the same way that people of "color" may see whiteness better than Whites, so people labeled as having a disability may be able to see normality better than those who are only, at best, temporarily able-bodied.

There is one difference between the status of whiteness (or, for that matter, masculinity) and the status of able-bodiedness: "Whites do not worry about becoming black; men don't worry about becoming women. Disability, however, is always a potential status..." (Gordon and Rosenblum 2001, p.16). It is probable, therefore, that significantly greater anxiety – perhaps terror is a better word – attends what is thought to be the dark specter of disability, and why eugenicism – again, perhaps genocide is a better word – remains a real possibility in the lives of people with disabilities.

This point, that ableism is created by those who define themselves as able-bodied, as normal, and that it is a master status invisible to themselves, calls out for the need to develop what might be called normal theory and normal studies, similar to the development of whiteness theory and whiteness studies, that can unpack more fully the ideology of ableism and expose normality as a scopic site for the subjugation of people labeled as having disabilities.

It is also likely, given the normative universalization of whiteness in modernist Western culture, that the construction of whiteness is at the complex, multiple roots of both racisms and ableisms. This is especially true given that eugenic science is at the heart of current special education, psychology, and the system of services and supports for people with disabilities (Kliewer and Drake 1998). Clearly, whiteness is intimately tied to modernist constructions of science (Kincheloe 1999). It would seem, then, that the projects of developing multiple, postmodern, normal studies may have as their subjects, at least in part, the complex ways in which whiteness ideology creates ableisms.

Kincheloe (1999) argues cogently, when discussing the normative landscape of whiteness, that: This norm has traditionally involved a rejection of those who did not meet whiteness' notion of reason emerging from the European Enlightenment. Whiteness deployed reason – narrowly defined Eurocentric reason as a form of disciplinary power that excludes those who do not meet its criteria for inclusion into the community of the socio-politically enfranchised. Understanding such dynamics, those interested in the reconstruction of white identity can engage in the post formal (a theoretical effort to redefine the Eurocentric notions of intelligence and reason by examining such concepts in light of socio-psychological insights from a variety of non-western cultures [see Kincheloe and Steinberg 1993; Kincheloe 1995]) search for diverse expressions of reason. Such a project empowers white students seeking progressive identities to produce knowledge about the process of White identity reconstruction, the redefinition of reason, the expansion of what is counted as a manifestation of intelligence, and the phenomenological experience of challenging the boundaries of whiteness. (Paragraph 56)

This analysis seems critical in understanding the relationship of whiteness studies and disability studies. The normative disciplinary power of whiteness undergirding the rationality of Eurocentric culture and thought segregates not only those defined as not-white from the terrains of equality, equity, and justice, but also those defined as not-Able (body or mind). A project of inclusion that reinvents whiteness by calculating freshly an ideology of diverse reasons, intelligences, and experiences will, of necessity, involve an exploration of the cartography of abled Normality. A broad whiteness studies approach must shake hands with a broad disability studies approach if either whiteness or ability is to be reconceptualized.

I propose an intellectual alliance between whiteness studies and disability studies in order to accentuate the underlying invisibility of normative whiteness and able-ness ideologies. These structures are at the core of Western culture, and yet remain unnoticed, un-observed. Without turning our cultural gaze on them – without scrutinizing and inspecting their borders – these ideologies will continue to oppress and obfuscate, exclude and excise, human communities that have been placed not just outside the margins, but off the page.

In calling for this kind of intellectual alliance, I do not want to place it in opposition to a creative, articulate, cross-disciplinary collaboration between race studies and disability studies. Besides creating a problematic and difficult binary, I want to acknowledge the importance of the work of anti-racist scholars like Derrick Bell (1987), W.E.B. DuBois (1971), Frantz Fanon (1968), bell hooks (1994), Toni Morrison (1992), and Cornel West (1999) in creating the possibility for and development of a robust whiteness studies. Race studies has functioned in the same way that disability studies has in creating the development of normal theories, as a kind of essential breeding ground for ideas and thought. The work of those within the Black American civil rights movement has done much to make it possible for people with disabilities to end their own segregation and discrimination (Robinson 2002). And the anti-apartheid movement in South Africa enabled some disability activists to begin thinking and arguing about the oppression of people with disabilities (Campbell & Oliver 1996).

What implications does this intersection have for both whiteness studies and disability studies? It will be essential for both scholarly fields to see themselves as inherently interdisciplinary. I use the term field, and think of the meadow out behind my old Vermont farmhouse, filled with an amazing diversity of plant, animal, and, as I walk through it on a late summer evening to swim naked in the dark at the pond by its edge, even spiritual, life. To explore that meadow, to understand it in totally new and increasingly holistic ways, I need to be not just a biologist, zoologist, or botanist, but a poet, a farmer, a philosopher, a sociologist. So, too, will those seeking to explore the meadows of whiteness and disability need to stretch far beyond what has traditionally been thought of as the processes of exploration used to outline cultural processes – they will need to use a synergistic tool belt worn by an overtly Renaissance craftsperson.

What does it mean for whiteness to recognize disability within its own ranks? An exploration of the way ableism fits in with all the other "isms" will be an important expansion of the work of whiteness studies scholarship. Too often left out of such cultural exploration, an understanding of the impact of disability on whiteness in Western culture will be an area worth exploring. For example, what is the intersection of whiteness and disability in novels like Moby Dick, The Color Purple, or Heart of Darkness, in films like Taxi Driver, or in works by photographers such as Diane Arbus?

And what role does race play in the context of the disability rights movement? We know something of how the history of disability rights activism owes something to the civil rights movements of Blacks in this and other countries, but we know only relatively little about how whiteness and racism is played out in concrete terms on the bodies of people with disabilities as they struggle to move from the margins to the center.

To borrow again from Kincheloe, "understanding that identities are always in the process of negotiation, critical pedagogy of whiteness does not seek to produce closure on the new white identities it engages" (1999, Paragraph 58). So, too, must an activist pedagogy of normality resist finality, and rather assert that it is always coming to grow toward new abled identity. Whiteness studies, normal theories, and disability studies must continue to stretch their boundaries, to look in new ways, with new tools, at the stories we tell ourselves about the way we live our lives.

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