At a lunch I shared with Margaret Price, Anne Dalke, and a few other students, Price, explaining the difference between the medical humanities and disability studies, told us that while the medical humanities has arisen from within medical schools themselves and thus looked to reform medicine from the inside, disabilities studies instead had roots in academia and looked toward past social reformations – the civil and women’s rights movements, for example – as the basis of its theoretical foundations. Disabilities studies is “both an academic field of inquiry and an area of political activity” (Davis xv) that “aims to challenge the received in its most simple form – the body – and in its most complex form – the construction of the body” (xvii). The field is concerned with the idea that “the world [is] structure[d] for people who have no weaknesses” (Wendell 243), and that weakness in and of itself is a socially constructed paradigm based upon some unspoken human archetype for which everyone is implicitly required to strive.
It has only been recently that disabled individuals have considered themselves a united minority, and it was only in 1990 that the disabled minority gained ground politically with the passage of the Americans with Disabilities Act of 1990 (xvi). Scholarship on disabilities has been limited until recently, with the field’s grassroots originating in the earlier work of Jacques Derrida, Judith Butler, Susan Bordo, Erving Goffman, and David Rothman, among others (David xvii). These earlier writings, published not under “disabilities studies,” but rather under a hosts of other titles – feminist studies, philosophy – all have the social emphasis of a bodily archetype at their core and have since been incorporated into the body of developing work in the field of disabilities studies (xvii). Davis writes,
[T]he work of a newer generation of writers and scholars looks toward feminist, Marxist, postmodern, and cultural studies models for understanding the relation between the body and power . . . [t]his next generation of writing tends to be created from within the boundaries of disability (xvii).
This newer work, instead of attempting to “share” the disabled experience by showing audiences what it is like to be, deaf, blind, etc., instead refuses to write for normative audiences, and thus shuns the inherently unequal balance between disabled and able-bodied that occurs when works are “sensitized” in such a way (xvii). By upending this power dynamic of sensitization, disabilities studies creates room for critical inquiry into difference without falling into an advocacy trap that promotes emotive, sympathetic understanding and, in doing so, reinforces cultural conceptions of disability as weakness and as disadvantage.
In my examination of Wasted, I will largely be concerned with disabilities studies as a reflective field – as a field that sheds light on the constructions that either name or cause disability. In explaining the traditional view of disability, Davis states, “disability has been seen as eccentric, therapeutically oriented, out-of-the-mainstream, and certainly not representative of the human condition” (xv). Because of this view, disability may be theorized much in the way that “race, class, and gender have been theorized” (xvi) – namely, in a way that places disability in a sociopolitical cultural context. More than a medical genre, disabilities studies resists the institution of medicine as an explanation for what we as a society are to do with these individuals. Instead, the field considers individual difference in the context of social and political consequence, focusing on oppression as a result of being named disabled and ultimately attempting to de-institutionalize difference. The field is concerned with the power dynamic between the disabled individual and society, showing that being labeled with a disability “exposes affected individuals to inspection, interrogation, interpretation, and violation of privacy” (Couser 400). Couser explains, for example, that “people with anomalous bodies are often called upon to account for them, sometimes quite explicitly: they may be asked, ‘What happened to you?’ ” (400). For the purposes of my paper, disabilities studies will be a means of explaining eating disorders outside of the clinical literature – of answering how culture is constructed in such a way as to facilitate the development of these disorders and of exploring how society might cope with these disorders in non-clinical ways.
The United Nations defines disability as “[a]ny restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being” (244). Handicap, which refers to the social disadvantage resulting from disability, is “the loss or limitation of opportunities to take part in the life of the community on an equal level with others” (24s4). Thus, social function is inextricably linked to social constructs, like disability, that allow for “normative” experiences of society. Susan Wendell, in “Toward a Feminist Theory of Disability,” points out that the given definitions of “disability” and “handicap” are dependent on recognition of the normative (245), and that “[p]aradigms of health and ideas about appropriate kinds and levels of performance are culturally dependent” (245). She points out that because social conceptions of disability are so dependent on context, “we might eliminate the category of the ‘disabled’ altogether, and simply talk about individuals’ physical abilities in their social context” (245). Thus, disabilities studies, as shown by Wendell, is an examination of functionality within cultural confines and an inquiry as to how degrees of functionality may contribute to a given culture.
In their article, “Culture as Disability” by McDermott and Varenne, this link between disability and social construct is made apparent. McDermott and Varenne argue that culture is both able-ing and dis-abling in that it selects certain features (i.e. thinness, economic success) and creates a society in which those features make existing easier. For example, the advent of the radio depended on the fact that ours is a “hearing” society, and that the normative, able-to-hear majority would benefit from receiving information in this manner. The appearance of the radio, then, introduced a means of obtaining information that excluded those with a “disability” – here, deafness. McDermott and Varenne point out that it is in these social inventions that disability is created. In the exclusion of a minority feature in an action that favors the majority, a degree of social functionality is lost.
With these broad conceptions of disabilities studies in mind – culture as constructing disability and disabilities studies providing for a non-medical inquiry into disability – I will now briefly turn to disabilities studies’ interrelation to the medical humanities, theories of autobiography, and feminism. Wendell writes that contemporary medicine “plays into and conforms to our cultural myth that the body can be controlled” (249). She observes that doctors are “trained to do something to control the body” (250) – the body must bend, under various therapies, to the will of the physician, who is ultimately aiming to return the body to a cultural norm. She calls this the “heroic approach to medicine” (250), and labels it an approach in which “[m]edical professionals have been given the power to describe and validate everyone’s experience of the body” (253). The medical humanities, in line with Wendell’s description of western medicine, does not desire to subvert the power or aim of the medical professional. Though change to the existing framework of medicine is desired, the medical humanities does not seek to question the medical nature of the framework in which medicine operates. The field instead seeks reform within the framework. Disabilities studies, by contrast, relies on the non-medical nature of illness to explore how it might be handled, and in doing so, pushes away from traditional medicine. Subversion is key to disabilities studies if change is to be made.
Though disabilities studies is often at odds with the medical humanities, because is has roots in feminism, feminist theory about disability has been crucial in pushing the movement forward. Rosemarie Garland-Thompson writes, “The fundamental premise of Disability Studies is that disability is a culturally fabricated narrative of the body, a system that produces subjects by differentiating and marking bodies” (1). Her observation of the field draws directly from feminist theory. Feminism rejects the cultural narrative of the female identity and body. Disabilities studies rejects the narrative of the disabled identity and body. Wendell claims that disabilities studies cannot be separated from feminist studies, as both force “[you] . . . to realize that other people have more social authority than you do to describe the experience of your own body” (254). Combining the two fields into what she refers to as “feminist disability critical theory,” Garland-Thompson outlines a methodology that allows us to approach the narratives of disabled women:
The fundamental premises of feminist disability critical theory are: that representation structures reality; that the margins define the center; that gender and disability are ways of signifying relationships of power; that human identity is multiple and unstable; and that all analysis and evaluation has political implications (6).
It is this approach to the disabled female condition – that society has constructed gender as a disability, and that a disabling gender and a traditional disability are inseparable when criitically viewing a disabled woman – with which I will be concerned in my examination of Hornbacher’s memoir.
My final area of interest with disabilities studies lies in its relation to theories of autobiography and representation. Couser writes that “[t]he cultural representation of disability has functioned at the expense of disabled people, in part because they have rarely controlled their own images” (399). In contrast to this historic representation, Couser states that recent life writing exemplifies a way in which “disabled people have initiated and controlled their own narratives” (399). This writing, he suggests, should be considered a “retort” to “misrepresentation of disability” in that the writing resists the cultural narratives that are “inscribed” on the bodies of the disabled (400). Expanding on Couser’s idea, Margaret Price, in “Her Pronouns Wax and Wane: Mental Disability, Autobiography, and Counter-Diagnosis,” describes the ways in which, by showing a multiplicity of selves through the deliberate confusion of a narrative “I,” autobiographical writing by disabled individuals creates a culture of counter-diagnosis that defies the framework that contributes to the institutionalization and oppression of individual difference. As shown by Price, Couser, and others, disabilities studies is largely integrated with cultural and personal narratives of disability and gender, and in its challenging of traditional medical structures, provides a key insight into Hornbacher’s representation of eating disorders, which stretches beyond the clinical and the personal.