Ash Brittenham, at a July 28th, 2017 rally held in Portland, Maine in support of Sen. Susan Collins’s decision to vote “No” on the ACHA

Image Description: Activist Ash Brittenham sits in a motorized wheelchair, surrounded by other protestors in front of a theater marquee. Wearing a cap and sunglasses, a large hand-drawn sign is taped to their legs that reads: “If I’m dead, who will inspire you?”

Disability: A Democratic Dilemma

Committee: Linda M.G. Zerilli (Chair), Patchen Markell, Demetra Kasimis, and Susan Schweik (UC Berkeley)

My dissertation seeks to understand why it is that demands for inclusion are so often voiced in two different, if not competing, registers. That is, at the same time that marginalized and excluded groups seek to assert their equality, and by extension, their right to equal treatment under the law, they often do so by emphasizing their worth to the polity and the benefits that will follow from their greater inclusion. This apparent conflict between equality as self-evident truth and the necessity of justification implied by assessments of worth is, I suggest, symptomatic of a deeper problem in our thinking about membership and inclusion, particularly for those individuals who are not readily assimilable into dominant conceptions of citizenship.

Taking up these issues as they relate to disability, I aim to understand why it is that this mode of argumentation—that is, the emphasis on worth as the coinage of membership and inclusion—has become so prevalent in disability studies and activism. Insofar as disability as a category of difference remains inscribed within rhetorics of tragedy and loss, a focus on its benefits would seem to provide a valuable and necessary counter-narrative. And yet, as sympathetic as I am to this move as a mobilizing tactic, I am less convinced of its suitability as a justificatory strategy in making rights claims, particularly in the case of disability. This is not simply because judgments of worth—no matter how capacious—risk the further exclusion of those whose equality cannot be so easily justified. Nor is it the case that focusing on the benefits of disabled inclusion contradict or are made redundant by parallel claims made on the basis of intrinsic worth or dignity. Rather, I turn to disability because it provides a potent illustration of the ways in which this mode of thinking, and the almost reflexive ease with which it is marshaled in the service of rights claims, infects the way we think about citizenship and belonging. Indeed, it is precisely because the revaluation of disability seems so logical—even expected—I argue, that makes disability such an apt candidate for a deeper consideration of the relationship between worth and citizenship.

Focusing on the idea of worth as connoting both economic, social, and moral value, the first substantive chapter explores the complex relationship between disability, labor, and dependency in order to understand the significance of worth as an index of both moral standing and economic productivity. The second chapter intervenes in recent debates within disability studies and bioethics concerning the permissibility of prenatal testing and selective abortion (that is, selection against fetuses found to have a disability) in an effort to understand both the structure of these debates and their implications for broader efforts to secure disabled equality. Turning, in the third chapter, to the Flint, Michigan water crisis, I show how the focus on prenatal testing and abortion as the nexus upon which arguments for disability preservation turn obscures the way the ways in which most disabilities are acquired. The Flint case, I argue, illustrates the need for a more developed understanding of prevention that takes account of class, race, and differential susceptibility to environmental harm—an understanding that is not possible from within the confines of an emphasis on the value or worth of disability. I will conclude by considering the ongoing debates surrounding the ethical permissibility of gene editing and the modification of human embryos in order to explore ways we might argue against the unrestrained use of these technologies without falling back on assertions of the value of conserving disability.

While my focus will be on disability, it is my hope that the implications of this analysis will illuminate the degree to which our broader thinking about citizenship and equality has been and remains structured and determined by this emphasis on worth.  If disability exposes both the allure and the tenacity of this mode of thinking, it also, I will argue, provides a vantage point from which to imagine possible alternatives.