The Female Face of Shame

5. Interactions of Disability Pride and Shame

74 Interactions of Disability Pride and Shame Eliza Chandler In this chapter, I write about the interrelatedness of disability pride and shame. I suggest that when an unwavering satisfaction with our embodiment is understood as a prerequisite for embodying disability pride, we constitute disabled people with wavering relations to their embodiment as “excludable types” (Titchkosky, 149–150). This chapter explicates my supposition that popular ways of imagining disability pride, as existing in complete abandonment of shame, excludes those of us who relate to our embodiment with a wavering pride. Thus, this chapter presents a configuration of pride and shame in which these two embodied relations can exist together. To begin, I discuss how disability pride appears in popular “discourse,” using websites and life narratives (Foucault, Archaeology of Knowledge). In my interpretive textual analyses, I am particularly attentive to how these texts articulate that embracing disability with pride requires a turn away from shame. I reveal how this popular structure for telling the story of disability pride excludes those of us whose satisfaction with our disabled bodies wavers—a wavering bodily relation that my experiences of cerebral palsy tell me is often a reality. I then turn my attention to shame. In this section I engage Ahmed’s articulation of “stickiness” to explore how shame can swell up under our skin and “stick” us to the world and its common, everyday understandings and interpretations of disability (Cultural Politics). Here I use Ahmed’s work along with the cultural theorist Sally Munt’s 2007 writing on shame in order to think through how an epithet called out to us has the potential to lurch us out of our sense of “being-in-theworld ” with pride, by causing us to swell with shame (Sartre). I suggest that because this shame can “stop things moving,” we need pride to keep from being shamefully held back (Ahmed, Cultural Politics, 27). This chapter’s conclusion suggests that when we constitute a normative standard for how one should come into disability with pride, as always and only articulating the requisite move of turning away from shame, we foreclose the opportunity to tell the other stories of bodily relations. I articulate how the move of turning away from 5 Interactions of Disability Pride and Shame | 75 shame—required by us in order to come into disability with pride—requires us to also turn away from possible stories of disability pride that may live beneath our bones in countless ways. This chapter closes with a story that describes how living with disability pride is necessary for me to take care of myself in moments of public humiliation wherein I inevitably feel ashamed. According to disability studies1 cultural theorists David Mitchell and Sharon Snyder , “nearly every culture regards disability as a ‘problem’ in need of solution” (47). The understanding that disability is located in individual problematic minds, bodies, senses, and emotions informs our current Westernized cultural understanding of disabled embodiments (Michalko, Difference, 1–8; Titchkosky). The cultural imagination of disability as a problem that “needs” to be solved tells disabled people that shame is one of the most appropriate emotions through which to orient to our embodiment. Shame2 is appropriate insofar as we, disabled people, are ashamed of “our problem” and this shame drives us to seek a solution through, for example, medicalization, rehabilitation , or simply ignoring our embodiment at all costs. In the midst of the cultural requirement to be ashamed of disability—our own and those of others—the possibility of being proud of disability may seem to be contradictory when one first comes across the idea of disability pride. And yet, from my experience I know that the more time one spends with the conceptual possibility of disability pride, the more likely it is to transform from an unthinkable concept into a desirable way of “being-in-the-world” (Sartre). Through disability pride, understood as an orientation to disability and not as a solution to it, we can recognize disability as an identity that binds us to others and to the world rather than as an individual problem experienced in isolation. Disability pride can enable us to come together in communities, develop cultures, work out subversive and reclamation languages, and establish a personhood of “disabled people” as an alternative to a disconnected population of “people with disabilities.” In other words, disability pride can allow us to “be at home” in our disabled embodiments and live comfortably in the world in disability rather than being estranged from it...